Monday, November 14, 2005

Monday's Visitors and the Doctor's Visit

My cousin, and third brother, Rich Boulger, came through town today and we (my brother Mike and I) had the chance to spend a few hours with him. We, of course, went through some of our favorite childhood memories and caught up on our what our kids are doing. Rich delivered notes for me from each of his 3 kids, introducing themselves and wishing me well. They were very sweet. We promised we would have that wiffle ball game in Chicago as soon as I am feeling better. It was so nice to see Rich as I haven't seen him in at least 5 years, if not longer.

Mike took me to the clinic today; my 4th consecutive day at the clinic. It was a good visit. My doctor thinks I am doing really well, despite my feeling so tired. The 2 days of neupogen shots kicked my white cells way up as hoped. He said I am doing so much better than most people do 30 days after transplant. He also said that it will take at least a couple of months (maybe by Christmas) for me to notice a significant upturn in my energy and probably 6 months to feel like I have recovered most of my energy. I also had many questions for him about my myeloma numbers. (I don't think very quickly these days, so it takes me a few days to come up with questions) His response: don't pay attention to the numbers, it is way too early and you'll just drive yourself crazy trying to make something of them now. He also said that everyone agrees you can't know anything for 60 to 90 days following transplant. So we are readjusting our sights for mid January and plan to spend the next few months just enjoying my slow recovery.

My brother Tom is in Berlin on business and called me to let me know that the latest issue of Newsweek features advances in health care with focus on a man who has multiple myeloma and is now in remission. We can't find the issue so if any of you find it, please let me know the date of the issue, or buy an extra one for us. Thanks.

Mike leaves tomorrow. As with past family visits we put him to work, although less than the last visit. It has been nice to spend time with him, other than in a hospital room as with his last visit. We removed the hospital bed from our bedroom today, after 4 months. Mike helped with the purging and it is so nice to be out of that bed as it feels things are starting to return to normal. As with the other family visits, it seems that Susan just laughs and laughs when they are here. It's good to hear that laugh as things can get (and have gotten) awfully serious around here at times.

This blog continues to amaze me. We now have communications from Paris from our very good friends Sigun and Joe Coyle, as well as the Dakota Kid (is that you Bob T.? Thank you for the nice comments) and Stacey, your note in response to Susan was so nice and reminded us not to lose hope. And I continue to learn of friends who follow the blog closely but don't post comments. We received the nicest gift from a high school friend the other day, who had read of the visit of the statue of the Virgin Mary. She sent us 2 rosaries from Medjagorie, (sp?) which had been blessed there. She or her husband had purchased them in Medj. on their last visit there. Thank you Edna. Susan and I are overwhelmed by the gift. Next visit to the clinic is Wednesday. My doctor is talking about possibly removing my Hickman catheter this week. wouldn't that be nice. Love, Dan

11 comments:

Bernadette Boulger said...

Dan,
You are truly blessed! You sound great. Thanks for being such a great inspiration. I will continue to keep you & your family in my prayers.
Love,
Pat's wife, Bernadette =]

sigunjoe said...

Dear Dan,

I must say that I really like the attitude of your doctor re. your myeloma count: don't worry, it is too early to know. I know it is easier said than done, but you'll do it, knowing your determination.

Today I am off to the Cathedral early since I am in charge of the Thanksgiving luncheon for about 30-35 members of our Junior Guild. I am having six small turkeys spit-roasted by the 'Boucherie Roger', so all I'll have to do is carve them; Joe will come and help with that task. Bises, sigunjoe

Arlene said...

Hi, I tried going through the net to see if I found the Newsweek you were talking about. I have not, but in doing so, the blog listed below came up. Thought you might be interested. Give it a look.

Ar


http://www.jonsiegel.com/health.html

Dan said...

I found the Newsweek article. It is in the recent issue with John McCain on the cover. So, all of you can stop the search. It is interesting reading and gives us much hope with these new drugs. Mike and I took a 16 block walk today (with coffee break in the middle--Mike says this doesn't really count as a 16 block walk). I'm feeling pretty good today and I love this weather. Dan

Tom said...

Dan,
This is my last night in Berlin - I leave for Turkey tomorrow, first Ankara and then Istanbul (got to check out for Spike where that bull is still standing - stay tuned). I found the Newsweek article on the web at http://www.msnbc.msn.com/id/8270980/site/newsweek

The guy's name who had the good results is James bond!!

I quote from the article: "Summer 2005 - James Bond usually gets a laugh when people hear his name. But the 56-year-old accountant from Shaker Heights, Ohio, figured it might be a good sign that he was assigned the patient number of 007 when he entered an experimental-drug trial at Boston's Dana-Farber Cancer Institute. He needed all the help he could get in his fight against multiple myeloma, a cancer in which white blood cells called plasma cells invade the bone marrow. Bond says that when he was diagnosed in 1992, an X-ray of his skull "looked like Swiss cheese," and he had broken several ribs simply by sneezing. Over the next decade, he tried a number of treatments, including three stem-cell transplants, that put the cancer in remission. But by 2002, Bond had reached what he and his wife, Kathleen, thought was the end of the road. "It was clear I was in trouble and needed something," he says. The couple started to look at the possibility of entering a clinical trial and found that Bond was a candidate for a drug that at the time was called PS-341. It was the break he desperately wanted. After only two weeks, the drug (now known as Velcade) removed virtually all of the cancer cells in his body and put him in remission. When his cancer slowly returned, he took part in a trial of the drug Revlimid, now on the fast track for approval. Research is saving my life," says Bond. Velcade, the drug that initially helped Bond, belongs to a class of agents called proteasome inhibitors, which regulate protein turnover. It was initially developed as a treatment for muscle-wasting conditions because it could prevent the destruction of proteins needed for healthy cell growth. But research showed that it could also selectively stop the unhealthy growth of some types of cancer cells, particularly the cancerous plasma cells in multiple myeloma.

At about the time that Velcade was being tested, researchers were looking into Revlimid. It's a small-molecule drug related to thalidomide, a mainstay of multiple-myeloma treatment. But it's more potent than thalidomide and has fewer side effects. Revlimid works by targeting the destruction of myeloma cells and blocks the blood and nutrient supply required for these cells to grow in bone marrow, says Dr. Ken Anderson, director of the Jerome Lipper Multiple Myeloma Center at Dana-Farber, which took the lead in laboratory and clinical trials of both Velcade and Revlimid. "There weren't any new treatments for myeloma in years, and then you have two new treatments in just months," says Anderson. "It's an amazing time."

Love,
Tom

AB said...

Having survived melanoma twice, I came to realize that melanoma is just a word, not unlike Oklahoma. I, me, myself am no more melanoma than I am Oklahoma. Myeloma, melanoma, Oklahoma, ok.

Dan, you are not myeloma, you are Dan, the best man in town.

Alexandra Branyon cordially invites you and Susan to another beautiful dinner cooked by Karen Lee in Amagansett. The invitation remains open, just like your heart.

Dan said...

I don't know if it is in the recent issue of Newsweek or not. I also found it on line. the title is: Making Chemo Easier to Take, by Joan Raymond and Barbara Kantrowitz. It is very encouraging, as my doctor as always been--there is alot of leading edge research going on right now in the area of blood cancers. Safe travels Tom. Look forward to hearing from you from other parts of the world. Dan

Dan's Mom said...

What wonderful news. I shall go to the library to see if they have that copy of Newsweek. I always knew you were going to be all right. There was no way you could be otherwise with your attitude. This is the kind of news we have been waiting for. Love you,Dan's Mom

sigunjoe said...

Good morning, Dan! You took a 16-block walk -- bravo!

Please thank Tom for sending us the article in Newsweek. That truly is fantastic news. And with James
Bond blazing the way, what can go wrong?!

Off to the Cathedral to prepare our Christmas Fair. Bises, sigunjoe.

Arlene said...

Hi,

It was interesting to read the article about James Bond that Tom put on the blog. Jon Seigel (the blog that I listed the other day) also is a Dana Farber Cancer Institute patient. I don't know if you got a chance to read it.

Talk to you soon - Ar

Mrs. Joshwick said...

Well it was quite the visit. All things considered,Dan is doing amazingly well. One of his biggest complaints now is boredom. To me that's a good sign, though.
Met his doctor, his assistant and some of his nurses. All very nice and caring. It was a good thing I was there because Dan had all these questions about numbers and half lives for the doc but forgot a key inquiry which I asked. When can he start skiing again? Dan actually hit me(Another good sign.) when I asked that, but we did get an answer----it's up to the orthopedic.
Yesterday, Dan walked 6 blocks to the coffee shop, then 2 blocks to the bookstore and then 8 blocks home. Dan's right; I don't call that 16 blocks, but it is an improvement over the total of 8 blocks he has been doing, and he didn't take a nap when we got home. As I told him after we got back, "You're an animal." He'll be doing 16 soon.
It was nice to visit with several of Dan's friends who dropped by, cousin, Rich, and the medical supply guy who took the hospital bed away. I enjoyed spending some time with Catherine who was home for the weekend. It was also fun counseling Julia over the phone, but I don't understand her calling me Tom or Gary when I tell her it's her favorite uncle.
Oh yea, and Susan. I can't be too sweet or she'll start crying. Dan would not be doing so well without all your love,your boundless energy and unquestioning support. Who could have ever imagined 8 months ago what you'd be going through? You have not flinched. In spite of all that you two have been through, you still have that wonderfully, infectious laugh.
Dan, it was good just to be with you. You're a saint. I love you.
Mrs. Joshwick