Thursday, March 02, 2006

Numbers Move Slightly, But in the Right Direction

I know many of you are waiting for the news of the "numbers," so here they are: IGG at 2837. Previously it was at 2853. Not much movement, but at least in the right direction. I am remarkably unphased by it. As I was sitting in the exam room, after they had drawn the blood and just waiting for the results I realized that I had no investment in the outcome. I am feeling so much better than 6 or 7 months ago and I still believe that this drug will work for me that a temporary measurement of the numbers feels close to meaningless. I have been on this roller coaster for so long (11 months) that ups and downs are a given.

I had also decided that if there was little movement in the numbers today I would start back on the herbs, so when I got home that's exactly what I did. If I'm going to be a guinea pig (clinical trial= experimental) then I will do my own little experiment. This is also motivated by the drop in the white count. The white count did not move up significantly during the week off, and today I am actually neutropenic again. At a minimum I believe quite strongly that the herbal regime will boost the white count. And the white blood cells should have some capacity to attack the cancer cells, so the more the merrier, as they say. I will stick with it until the next myeloma blood draw and report of results. So, it will be about a 10 day test. If no adverse consequences, i.e., numbers going up, then I'll stick with it, as I know an herbal treatment will likely take longer to have some effect on the cancer.

Oh, they also measured my PSA (prostate specific antigen),which is .1. That means that the hormone shot they have been giving me (along with the velcade perhaps) is keeping the prostate cancer from growing. My PSA was 7.5 last March which lead to the prostate cancer diagnosis. So that is good, as it looks like it will take some time to get this myeloma in line (or out of my system). I'm scheduled for another hormone shot in a month. Love those hot flashes! NOT! I have developed great empathy (Yes, empathy) for all you women who have gone through menopause and suffered those years of hot flashes. Well, you got nothing on me anymore, my dears. I share your tears, and your sweats.

To put this all in perspective, I overheard a conversation today with a man who needs a transplant and whose autologous (his own) stem cell transplant didn't work and whose sister was not a match, and who they had yet to come up with a match in the national donor bank. Even if they find a match, a transplant from an unrelated donor is a much more difficult prospect than from a sibling. I can count my blessings every day for my brothers' matches.

Incidentally, my mother predicted long ago that Mike would be the match. A mother's intuition is hard to beat. She also said this fall that despite everything I am going through I will be OK--she just has that feeling, she says. Her intuition always threw me. When I was in college and would leave to go visit my friends, such as Spike and Howie in Grand Forks, she always knew the day I would return, even though I wouldn't have decided until that day. I could never understand that. And now she's even agreed to host a party at her house for the bloggers. What a Mom! But then all the people I grew up with have always known that.

Now, about that decision of selecting the proper donor. I see that the "Big Fella" has yet to weigh in on the matter. In reflecting on that I think I understand why. All criteria seem to have a common element: toughness. Whether a fight in the back yard, as I suggested, a test of orneriness as suggested by Joe, a Risk game as suggested by Kathy, or either of Spike's ideas, they all have that same theme. Now, if that is the test, can the Big Fella measure up when he is now going around in drag, masquerading as Mrs. Joshwick? Muscles Mike (his self assigned nickname in high school) would be so ashamed. Perhaps he's suffering some regret about revealing so much of his feminine side in light of the macho tests being recommended. I'm sure his silence has nothing to do with the fact that he is in Steamboat Springs, Colorado skiing.


And for those of you who didn't know, Tom's reference to his blood being able to beat cancer is serious. He recently underwent surgery for prostate cancer (late Jan.) and it appears to have been a great success. He is doing very well, is back at work, and as you can see, has a bit of orneriness still in him. Way to go Tom!

Cousin Rich just called and will be here soon, so I'll sign off. I'm doing fine, the velcade will do its job and I've got my two brothers to back me up if it doesn't. I'll bring you up to date in a week or so. Love, Dan

12 comments:

Molly said...

Dan,
Glad to hear the numbers are moving in the right direction and that you are becoming a little bit of a scientist ;-)
See you sometime soon!
Molly

Dan's Mom said...

Thank you for the kind words. A mother always enjoys getting some praise. However, I am glad my intuition did not always tell me what you guys were going to do. Sometimes ignorance is bliss. I did say that using Joe's analysis I think Mike is the one. Hello to my special nephew,Rich. Love to you and the girls and especially Susan. Love,Dan's Mom

B.J. said...

dear dan and others :) I really have to put in my 2 cents - about that person dan's mom. Now Dans mom is my stepmom and I love that woman- and you-> wonderful son of Joan I am getting to love you like I love her.Those that dont know Joan and her herd of incredible offspring.. she molded and raised and spit out the funniest and bravest human beings I think I know. Well, Mike I dont really know ( but hes the meanest and oldest - so of course he should be used to be the donor.) There are many other adjectives to describe this wonderful Patterson family... and you Dan have heard them all. Any way once again I have the misty eyed thing going on... I think of you every day and love that your spirits are high and your living life every day as a gift... I like that Dan xoxo love and hugs...
signed.. daughter of BOB.

Brad said...

Testing One-Two, test..test, can you read me...over?

This is an "initial blog contact" from Brad (aka Seedge, Sidgel, Eric (don't ask how I got this one, I'm not telling), "The Bradster", and last-but-not-least...just plain ole "Sigl".

Thanks for the blog address, and the quick response Mr. Dan. I see I have a lot of catching up to do here, this may take awhile. Just dropping a note to let you know I got it, and to make sure I'm getting thru to you. I'm starting at the beginning (Sept 15th), so this may take awhile.

Well Daniel, it's a bit of an understatement to say that I was just "a little disappointed" to find out things haven't unfolded as planned with your stem-cell transplant, and subsequently postponed prostate surgery.

So ok...fine..FINE goddammit! We're not merely a "one-trick pony" here, and your journey back to health isn't just a simple "one-act play" Daniel. This cancer's days are numbered, and it's "go'en down". One way, or another...it's history. I've been sending you all sorts'a ultra-extreme positive energy...to the point I'm getting a headache from focusing so hard! And yet...this friken disease has basically "flipped me off"! So ok...now it's personal...it's go'en down I tell ya...and it's go'en down hard!

That's alright Daniel, it's cool! Yup, "tick-tock" "tick-tock", time is running out on our little intruding freak-of-nature here, its days are numbered. Patience is a virtue my friend, it's go'en down, you're getting your health back...and then we're gonna celebrate.

Once I'm done catching up on the details of your situation, I'll get back to you. Until then, just roll with the punches Daniel, I got yer back bro...we're beating this thing!

Bye for now,
Brad

Mrs. Joshwick said...

I've been out of town skiing until a few hours ago or I would have put this criteria nonsense about who gets to be the donor to bed sooner. Obviously, Dan's chemo brain was at work when he raised this baloney.There is a reason I am THE BIG FELLA. I've decided I will be the donor. End of discusssion.

Tom said...

Dan,
I noted that "the Big Fella" has weighed in on this thread. In typical fashion he has attempted to shut down discussion. Now where would we all be if we followed his lead here? No discussion - no blog!! Yeah it's really that simple. But it doesn't stop there - no, not by a long shot. This is really about science and science encourages discussion and getting the RIGHT answer - not the answer full of bluster and bombast - in other words (yeah, we all know) the BIG FELLA answer. So I am confident to let science run it's course - including all the discussion necessary among all the experts, which would, of course, exclude the large guy. As we all know science thrives on, indeed requires, the free exchange of ideas. Science holds to no special vantage points or privileged positions. Science is a way to call the BLUFF of thoses who only pretend to knowledge. It is a bulwark against Big Fellas of the world. I'm confident when science runs its course that it will see the right donor is yours truly - the guy with the scientifically approved blood -

Tom - (Pete) aka T-Bone (the caner killer - yeah I know how to get rid of that crap) Patterson

Dan said...

Oh no, it seems that the fight I thought should take place in the backyard is taking place on the blog and in the public eye. Now just cut it out my two brothers. This was fun but I sure don't want you two sniping at each other like this--although I will admit Tom seems to have made it personal, but then he always was the better fighter, as long as it wasn't wrestling. The reality is that no contest is likely to decide the winner, nor are we. I suspect my doctor may have a say in all of this. So we'll call him the arbitrator and leave it at that. So shake hands Mike and Tom and say "all is forgiven." But I'm still up for that Risk game. I want to see Doug Kappel bunched up in Kamchatka and as I recall, Howier preferred to hide out in Australia and build up his armies until he attempted his world domination (which never occurred--bad strategy, Howard.) Take Care all and have a great week. Love, Dan

Mrs. Joshwick said...

Thanks,Dan.
Being a magnanimous kind of guy, I was simply trying to save everyone the embarrassment of getting creamed by me again in Risk. Some of you will recall (I know Spike will.)we used to have a weekly Risk game at Little Joe's, and we kept track of the winners. When we ceased having that weekly game, the Big Fella was the one who had won the most.
But if we do have a game in Dickinson, after I beat everyone, I will buy all the participants all the triple cheeseburgers they can eat at The Western Grill.

johns said...

Dan:

Sending to your work e-mail a picture and get well wishes from Brazil. That should account for South America!! Hope you liked the Tulips. Spring and good news is a comin!!

sigunjoe said...

Dear Dan,

The first thing I did when returning last night from sunny (except for one rainy, rainy day!)Napoli was check your blog. What a relief that the numbers are moving in the right direction, even if they do it at a slower pace than all of us wish! And I am sure that the herbs will soon make you feel better as well.

What a time we had in that thrilling, crazy, beautiful city of Naples! Everybody asks us whether we saw Pompei, Capri or Sorrento, but we felt 4 1/2 days in Naples was barely enough to see the city itself. Joe offered to do a little write-up on our trip, and as he is the 'writer', I will let him do that -- so be patient!

I wish you could come and browse at the annual BBB Sale (Books, Baked goods and Begonias) we are putting together this week-end at the Cathedral. We will all be baking up a storm (Suz, I wish you could help -- you're one of the best bakers I know!); Joe and Guy will be sitting all week-end in the glass 'cage' at the Accueil as our guards. Actually, those two like that duty since it gives them a chance to talk for hours!

Soon more. Bises, Sigun.

Dan said...

I don't know why but today I thought it was appropriate to give you bloggers a little more history on our friends Sigun and Joe, who have kept us entertained with their Paris adventures. Susan taught with Sigun in New York City before she met me. Then after Susan and I had our 5 year long distance relationship and Susan was faced with the difficult decision of uprooting and moving to Denver (how could the decision to spend the rest of her life with me be difficult?) Sigun stepped in and moved Susan in the right direction. Over dinner one night she and Joe looked at Susan and said, "we would like to give you a wedding." Well, Susan's decision was made. We got married in New York that summer on Fire Island and had our wedding dinner at Sigun and Joe's summer house there. We drank champagne, swam in the ocean and had a great feast prepared by Sigun. Since then, even though we are miles apart, we have become even closer friends. Once Joe retired they took up residence part time in Paris and part time in East Hampton. We were in Paris with them to usher in the millenium in Jan. 2000 and Susan has made an annual visit to see them in Paris since then. We have also had the pleasure of visiting them at their home in East Hampton in the summers. Sigun is a fantastic cook and has blessed us with her talents by coming to Denver to cook for such celebrations as my 50th birthday, as well as Catherine and Julia's high school graduations. She appeared here the week before I went in for my transplant and cooked all day for 5 days, filling our freezer with meals so Susan would not have to cook. Joe, of course, is a great writer, having spent a career in journalism. He retired a few years ago from his job as senior editor at Money magazine. They are also Julia's godparents. They call us at least once a week from Paris, just to check in. So that's a bit more background on our great friends who have walked us through the streets of Paris and its many sites. We all love you Sigun and Joe. This makes me think we really are going to have to have a "bloggers party", just for the fun of telling our stories. Have a great weekend everyone. Next week I am off the chemo. Yahoo! Love, Dan

sigunjoe said...

Dear Dan,
Sigun and I thought you and Susan might like to look back with us on the four great days we just spent in Naples. Hold onto the hope that you keep showing blog entry after blog entry, and maybe you both can imagine Naples and think about roaming it with us, say next spring?
Twenty years ago Sigun and I read an article in the New York Times travel section about Naples. We wanted to experience this city ever since, and now we have: four days worth, packed solid with astonishment. The article told us that Naples is an 18th Century city, a royal city, whose many palazzos were never torn down and never kept up, and that if you were looking for a repository of memory and a font of contradiction--more than half dead and yet twice as alive as most other places--Naples was for you.
On the way into town from the surprisingly small airport (2 ¼ hours from Charles de Gaulle), our cabdriver told us (Sigun translated) that the rest of Italy is cold, only Neapolitans are unfailingly warm. (Can you imagine? Italians cold?) In 20 minutes or so, we arrived at our hotel, the Caravaggio, small (18 rooms), in a 17th century building nicely redone inside. It is in Spaccanapoli (split Naples), the oldest part of the city, where the decaying palazzi, cafes, pizzerias, little shops selling wildly eccentric art objects and inspired junk, run along an ancient main thoroughfare still paved with uneven cobblestones where squadrons of Vespas slalom at warp speed around streams of watchful pedestrians, speeding both ways on this one-way street. Off it in both directions run many narrow alley-like smaller streets where great waves of drying wash hang from windows and balconies. As this is the rainy winter season, the garments are protected by vast sheets of bright blue plastic that give the impression of imminent flight to this unlikely setting. Here and there are great piles of garbage that add to the obstacle-course thrill of it all.
But all this is only the stage set. The actors make everything come alive. Just three examples:
--At 9:45 on Sunday morning, a brass marching brand from a local church struck up under our window. No warning, just a sudden explosion of sound, a trumpet and a couple of saxophones leading a bunch of drums and cymbals. We rushed downstairs and into the street just as the band was rounding the corner and down one of the wash-festooned back streets, playing a barely recognizable version of “Red River Valley,” and led by a marcher carrying a pennant showing two saints kneeling before the risen Christ. Later we encountered another band marching up the main thoroughfare, with sidemen collecting money from pedestrians. The music was—had to be—slightly off key, just like the band in the little Italian town that opens and closes one of my favorite movies. “Beat the Devil.”
--Between the two band blasts, we went to noon mass at the Duomo, just half a block from our hotel. On the way we passed a boy of around 10 playing a cheap accordion in the street. Sigun gave him a euro and he beamed appreciatively at us. Good marketing of course, it made us think of those neorealist Italian movies from the 40s and 50s where no one was a trained actor and everyone acted brilliantly. Or maybe he was sincere. Anyway, as we took our places in a pew in the Duomo five minutes before mass started, we realized that everyone was whispering. It was like a thousand little wings brushing against one another. In Paris, the silence in church is total. Sigun also noticed during the mass that the young girls were looking around at the boys and occasionally giggling. At one point the priest gave a blessing that involved anointing the individual with oil. But people approached the altar in twos, one with his or her arm thrown around the shoulder of the other. I have never seen such a scene at an ordinary mass in all my life. It did leave a feeling that here, as in so few places in our postmodern world, no one seems to be alone.
--One afternoon Sigun and I were looking for a bus stop at the Piazza Dante, on our way up to the great art museum on the Capodimonte hill. Suddenly a disheveled man appears and starts ushering Sigun toward a bus that has just stopped. A small plump woman comes straight up to me and waves her hand in a gesture clearly meaning: “Keep away from him. He is trouble.” I warn Sigun and she checks with the bus driver who says this is the right bus. Sigun gets on and the bad guy gets on just behind her, blocking my way from the front of the bus to the seats. He tries to divert my attention with a bus card while reaching for my left pocket—how did he know my money was there?—with his other hand. Unable to get by him, I push him away hard and just then the bus stops and he rushes off. As we go down the aisle almost everyone on the bus is giving us advice. Keep your coat closed. Guard your bag. And so on. They find out where we are going and make sure we get off at the right stop. Several times every day somebody stops us on the street, getting on a bus, just moving around, to warn us about pickpockets. I would have thought that Neapolitans were laissez-faire about this kind of thing. After all, the crooks are Neapolitans too. But this was not the case. Whenver we needed help with directions, people not only stopped to explain but often accompanied us part way to make sure we didn’t get lost.
There are so many touring highlights here. A church every five steps or so, some of them holding great paintings and sculptures. The archeological museum, with such a vast collection of objects from Pompeii and Herculaneum that we felt better about not making excursions out to those places.
On our last afternoon we took a funicular up to Vomero, a residential district overlooking the city and the bay from high up. We visited the monastery of San Martino, which affords the finest view of the bay. It has to be, as our friend Marie Noelle Herve has described it, the most beautiful bay in Europe.
Back at the bottom of the funicular, we walked through a section of Naples called Chiaia, which, coming as it did at the end of our trip, was the final contrast that put the whole experience together. It is the Upper East Side of Naples, where upscale stores with exquisite goods laid out in the kind of great Italian taste we were used to seeing in Florence and elsewhere in the north. The people were not the same as we had been seeing in Spaccanapoli. They were well dressed and acted much the same as the high bourgeoisie you encounter in Paris. We went into a glittering tobacco shop, unlike any we had seen in central Naples, to buy stamps. The proprietor seemed surprised that we would think he would be selling anything as insignificant as postage stamps. Makes you think all rich neighborhoods are more and more the same in our globalizing world, while all poor ones are different. And how poverty and corruption are what best explain beloved cities like Naples and New Orleans.
And the food? To a New Yorker like me, I would say that you shouldn’t come to Naples for best-I’ve-ever-had experiences. The food here, more so than even in France, is about memory and not novelty. It leaves you satisfied, not anxious. The pizzas got better and better as we ate them. The best was a simple Margareta made with fresh tomatoes and bufalo mozzarella. But the tomatoes were winter things, and made us wonder how much better the result would have been in the summer. The pasta with frutti di mare was beautifully sweet, thanks I guess to the many tender little things from the bay that were in it. The fish, which we ate three out of four evenings, was fresh and carefully grilled or baked. It could not have been better, and needed no embellishment. Our last night we went to a trattoria near our hotel, worn out by days of up to six hours of walking the crooked streets. This was a little place tucked away in a tiny square with perhaps eight tables. Two women cooked in the open kitchen in the back and a man served. Tired of seafood, we ordered eggplant and sweet peppers stuffed with cheese and fried, then penne amatriciana, grilled local sausage with fried potatoes, and an order of eggplant parmigiana. We drank deep inky Falerno wine and finished with simple panna cotta and espresso. It cost us around 50 euros tip included and sent us to bed like babies on Ambien. We left the next morning on the first sunny day of our stay, a little anticipatory kiss reminding us to come back next time in May.