Monday, February 27, 2006

It's a Match, and Other Happenings

As I mentioned in an earlier post, my brothers and sister were requested to have blood drawn to see if their blood matched mine, for a possible transplant (called a mini allogenaic transplant). They look at 10 separate antigens. I think it's called HLA testing. Anyway, they have all been subjected to the needle in the arm and had blood sent to the lab for testing. The testing involves 2 steps--a blood serology test and, if that matches, then DNA matching. There is a 25% chance that a sibling will match. If the serology matches, then the odds are 95% in favor of a DNA match. So here's the news: Mike (aka "The Big Fella" or "Mrs. Joshwick" on the blog) is a complete match on both serology and DNA. Tom (aka "Mr. Pete", and apparently now also known as "T-Bone" in Spokane) is a serology match and we are awaiting the DNA testing. They decided not to complete testing of my sister Kathy's blood, after getting Mike's results back, as apparently a woman who has had kids (Kathy has 3) develops antibodies that make the transplant more difficult for the recipient, even if the antigens match. So, in the event I will need another transplant to bring this myeloma under control, I have a match with Mike and also probably with Tom (will know in about 10 days). So here are the questions for you bloggers: For those of you who know Mike, "Is the world ready for 2 Big Fellas?" Should I have them go out into the back yard and take the blood donation from the one who survives? What testing criteria do you suggest to assist me in this very difficult decision? As I told each of them as I was saying goodbye on the phone today, "You take care of yourself, your life isn't just about you anymore!" All joking aside, I am overjoyed that if need be, I have a sibling blood donor to get me through the next transplant.

I had blood drawn today for myeloma testing, but won't know the results until Thursday. I feel quite good after this past week off. I think this velcade is a good drug. I got velcade (I'm starting my 3rd cycle) and zometa today, along with an antinausea drug.

And our abundance of friends continues. This weekend brought more of the same parade of friends through our house. We had such a good time. Both Catherine and Julia were home, which made it all the more fun. Saturday morning our doors opened at around 10 a.m. and Gail and her son Paul arrived. I student taught with Gail (she was my supervising teacher) many years ago (pre law school) and we have remained close friends. Gail is a techno whiz and has been helping us with various technical issues around the house, like DVD's and headphones, etc. Paul made me a "chain" of colored links, to count they days for my release from the hospital after my transplant. Soon after Gail and Paul arrived, Jim and Nancy Neenan showed up just to check in on us. They are the couple who were responsible for the statue of Mary coming to our house a few months ago. While they were here, our friend Devraj dropped by. Soon after that Kathryn McNamee, the principal at our girls' high school came by to go to lunch with Susan. Then Gail's daughter, Molly, and her fiance' Dan stopped in. Molly is getting married this coming summer and Catherine will be her maid of honor. Molly works just up the street in the lab at National Jewish Hospital and has been a great resource for us biologically challenged individuals. Jeff Hammerberg then stopped in, for his 2nd visit of the week, bringing a bouquet of flowers, as he so often does. Jeff had been by earlier in the week with his mother, Dollie, and his brother, Jason, both of whom were here visiting from Minnesota. I should note that I was lounging around in my pajamas when Gail and Paul arrived and I finally had to excuse myself at 1:30 to get dressed before I left for my meditation class. I got home at 6 p.m. and our friends, the Richardsons, arrived at 7 for dinner. Yes, they are still our friends, even after surviving an evening on the town with The Big Fella. (see the posting entitled, "Velcade--Second Cycle Begins"). Chris and Lenie Richardson are going to Italy this summer for their 25th wedding anniversary and we spent the evening talking about all the great places to see, the best restaurants, etc. (along with Julia and Catherine--who spent a semester in Florence). We also had to drink some Italian wine to capture the moment--yes I still imbibe on that week off. Sunday was relatively calm, with only one couple--Kevin and Mary Beall visiting us. Most amazing about these visitors is that (with the exception of the lunch and dinner guests) they were all "drop ins". We are so tickled that our friends are that comfortable that they just drop in to see us. That is usually such a rare occurrence in larger cities, but not in this household. And we are comfortable enough that I just lounge around in my p.j.'s. It is so much fun.

We have a couple of out of town visitors coming in this week. Tim Boulger, one of the cousins from southern California, will be here on Wednesday and Rich Boulger, who grew up with us in North Dakota, will be here on Thursday (for his second visit). I am looking forward to seeing both of them and catching up on all the family gossip.

Despite all the struggles and worries, life feels rich and full. We so enjoy all of our visitors and look forward to the weekends when we know our friends will be dropping in for a visit. I think our daughters are of a similar opinion, as they certainly like to come home for the weekends. All they can say about it is, "This is crazy." Yes, it is. And may it continue. Love, Dan

Wednesday, February 22, 2006

Nina's Quilt

Speaking of the abundance of friends (see previous post), I have to tell you about the quilt that our friend, Nina Companion, had delivered about 2 weeks ago. Nina used to live in Colorado and, although she now lives in Massachusetts, has been a source of constant support for us these past months, including a visit this past fall. So 2 weeks ago Friday I was having a particularly bad day and Susan tells me that a package has arrived for me. I open the large box and there is a quilt, with pictures sewn throughout the quilt. Nina got the pictures from Julia and Catherine (which they scanned and emailed) and they are photos of our family taken during the past 20 years. They are printed on fabric and sewn into the quilt. The quilt is such a work of love, even more so because Nina herself suffers from health problems which no doubt made this project even more difficult. To top it all off, Nina called the girls and asked them to show up that evening to share in the joy of the arrival of the quilt; so Julia and Catherine both showed up, independently and unexpectedly, and raised my spirits considerably. The quilt is in my favorite color: blue, and it keeps me warm every morning during my daily meditation. These last two posts are but a few of the many gifts of love that our friends have brought to us. Calls, letters, cards, visits, gifts, food, flowers, prayers and innumerable blog postings have rained down upon us. We are so grateful. Love, Dan

Tuesday, February 21, 2006

An Abundance of Friends

Since almost 2 weeks have passed since my last update I thought it might be appropriate to at least let all of you know what has been going on in our lives these past two weeks. I finished my second cycle of velcade last Thursday, got quite sick on Friday, as expected, and am now in the "week off" and enjoying the absence of any heavy drugs being injected into my system. In celebration of completing the second cycle Susan and I were invited to the mountains to stay with our friends, the Dowells, who have built a beautiful home in the Colorado Rockies. We spent two nights at their house with them just relaxing. It was so nice. Marta fixed great meals, we took long walks, and we sat in front of the wood burning stove and talked and talked (and drank a little wine--another one of the benefits of being off the velcade!) We returned on Monday very refreshed. When we arrived home we found dinner had been placed on our front step by our friend, Jeff Hammerberg, who stops by at least once a week (usually more often)just to check on us. We weren't home even two hours and our friends the Jennettes dropped by with a freshly baked apple pie. Of course, we had to drink some wine with them. While we were enjoying that visit another friend and former teacher of both of our daughters, Brett James, and a friend of his drop in "just to say hi". Oh, and while we were away at the Dowells, our close friend Ruth Clements, brought our 2 daughters fresh baked cinnamon rolls. (yes, we left our 2 daughters home for the weekend--they don't take after their father, thank god!)

This morning the founder of this blog, Ted Bettridge, calls and says he has fresh baked french bread and would like to drop by. He arrived a short time later with 3 loaves of warm bread. So, of course, he and I have coffee and bread slathered in butter and jam. While we are still eating, in walk Susan and Ingrid (yes, the blogger from Italy, who is here visiting her guy wholives next door). Ted was thrilled to finally meet Ingrid, after reading her many interesting postings from Siena. Then the doorbell rings and it is Peggy Rottner, with more food to keep us healthy. Just another morning at the Pattersons!

And this is how it has gone ever since that day I was diagnosed, almost a year ago, and our friends, Doris and Devraj Sharma showed up at our door that evening with dinner for the entire family. And as long ago and as far away as that day now seems, I continue to marvel at the warmth, generosity and steadfastness of our friends. Of all the things I have learned during the struggles of this past year, I think the most important one is what all of you have taught me--which is how to be a true friend.

I continue to feel better than I have in a long time, even though I tire easily and Fridays are just "the pits". I start the third velcade cycle on Monday and I'll have more numbers a week from this coming Thursday. Until then, take care and I love you all. Dan

Thursday, February 09, 2006

Numbers Dropping and Spirits Rising

This past 11 months have been such a roller coaster that we are naturally quite guarded in receiving any news. Good news has been rare and unfortunately temporary. We are ever mindful of there being no cure for this nasty disease but always hopeful for a turn towards greater control over the propogation of bad cells or even a push into remission. With that in mind we happily received Dr. Rifkin's report today that my IGG numbers have moved downward since we started the velcade. The IGG is "the enemy" in Rifkin's words. My numbers had been rising just before going on the velcade--they went from 2840 in late December to 3220 by January 9th, just before we started the trial. They have now dropped back down to 2850, as of Monday, Feb. 6th. Definitely a move in the right direction and seen by Rifkin and my study coordinator as a good response to the velcade, particularly in light of my having only received 4 shots as of the testing. Our whole family is relieved and guardedly hopeful. The failure of the transplant was so difficult to hear and then the apprehension of waiting for these tests results was quite unnerving. I just didn't feel prepared to deal with a nonresponse or worse yet, continued rising of the numbers. This has been such a mental struggle and even a bit of good news can carry my attitude a long way towards hope and recovery. So, today is a good day and we are ever hopeful that we will establish a long trend toward normal numbers and remission. I know, because I can feel it, that so many of you are waiting for this news and that we are in your thoughts and prayers today. Susan, Catherine, Julia and I are so very grateful that you are all in our lives and for all of your support. It feels like we are encircled by a wall of friendship that protects, prays and supports us. It is a very nice feeling. Thank you once again to all of our friends. We will get through this.

Incidentally, the vitamin regime has had a very positive effect on my neuropathy, having reduced the frequency as well as the severity of the shooting pains. Is it time for the herbs? Do I even want to start that debate again? Never mind, I think I'll just stick with the velcade for awhile.

So, I got my second velcade shot today for this cycle and will get 2 more next week, then a week off--thank god. They'll do more IGG blood work the morning I start my 3rd cycle--which will be in 2 1/2 weeks. I should finish the first regime of 4 cycles sometime in late March/early April. Then another bone marrow biopsy and a decision whether to undergo another 3 month cycle of velcade. That's all for now. In light of today's news, I feel much better prepared to deal with the side effects these next weeks. As always, Love, Dan

Monday, February 06, 2006

Velcade--Second Cycle Begins

Last week was nice without the velcade. I didn't realize how much it affected me until I got off it. My energy returned, just in time for my brother Mike's visit. Mike promised to bring some "fun" to the mile high city and he accomplished his mission. He had us laughing much of the time, which felt quite "normal" for a change. Our friends, Chris and Lenie Richardson went out to dinner with us on Friday and we had a raucous time. I thought the restaurant was going to throw us out. Catherine thought Uncle Mike was "hysterical" and truly appreciates his humor. I'm not sure the other patrons agreed.

I had blood drawn today to check the myeloma levels, but I won't know the results until Thursday. My white count rebounded some during the week off (although not as high as when I was on the herbs) and my platelets are good, so I qualified for the next round of velcade; yippee! Interestingly, one of the nurses gave me some home remedies to help reduce the neuropathy I get from the velcade. The remedy is heavy doses of Vitamin B 12 and folic acid--the same combination that my herbalist prescribed for me! hmmmmm.

So we start another round. I still feel good (relatively) and people tell me I look good, to which I always respond that "I'm the picture of good health". Truly, you wouldn't know I had anything wrong with me simply by looking at me. I'm not looking forward to these next 2 weeks but then there will be another week off and that will be nice.

And finally, I must apologize for the long delay between posts. Arlene gave me a hard time yesterday for not keeping more current(all in good fun I should add). I'll try to do better. I am very moved when I hear that so many of my friends and family check the blog first thing every day. How sweet to be in your thoughts so consistently. Your good thoughts and energy keep me going (and apparently looking good as well). Take care all of you. I hope you have a fine week and I'll report the news on the myeloma either Thursday or Friday. Love to all, Dan