Statistics and Other Tidbits

The visit with Dr. Rifkin today was uneventful. My basic blood counts (white, red, platelets) are normal. We'll get myeloma numbers (IGGs) next week. I've still got a small amount of the crud that leveled me a few weeks ago, but it's on its way out and I feel fine. So they juiced me up with velcade and the steroids and I'm off and running for another week. After being off the 'roids for 3 weeks, I'm bracing for an all nighter tonight.


Soon after returning from Paris Susan came down with the same flu I had. She's been quite sick for the past 10 days and is finally moving about again, although still not 100%. We're tired of it!

But now for the real statistics. Every once in awhile I get a report on my blog. It has some very interesting statistics. For example, the blog has had 968 visitors since March 17. The visitors have been from 4 different continents (North America, South America, Europe and Asia) and 20 states in the U.S. with an average of 12 visitors per day. All this activity causes me to think I should make this blog more interesting. But, then when it was more "interesting" I was a lot sicker. I think we'll hope to keep it boring.

Finally, as I mentioned earlier, I've taken a position on the Executive Committee for the Leukemia and Lymphoma Society's Light the Night Walk in Denver. If you're wondering what to do with those Economic Stimulus Package checks that are coming in the mail, a donation to the Leukemia and Lymphoma Society would be a great way to stimulate our economy. I will be setting up a website as in years past. Checks can be sent to Leukemia and Lymphoma Society, Rocky Mountain Chapter, 5353 West Darmouth Ave., Suite 400, Denver, CO 80227. Please note on the check "Dan Patterson's Team". And thank you. I can't emphasize strongly enough how important the research is, for me and many others like me. In my visit today with Rifkin I asked how long he thought I could go on this velcade maintenance program. His response was he didn't know (of course). But more importantly he said, it would depend on what other drugs have cleared the clinical trials and are available. The Leukemia Society's funding of cancer research has been highly successful, including the application of Gleevec to chronic myeloid leukemia, which is estimated to have saved 20,000 lives already. Any amount of a contribution is greatly appreciated.

I'll let you know about the IGGs next week. May you all have a great week.
Love,
Dan

The Good Doctor

Today I participated (listened) in to a live audio presentation from a professor of medicine/hematologist/oncologist from the University of Pennsylvania Medical School. The program was about stem cell transplants in the era of new drug therapies and was sponsored by the Leukemia and Lymphoma Society. Without going into the details of the presentation, let me say that there was nothing that I hadn't already talked about with Dr. Rifkin. In fact, a number of the new drug combinations were referred as still being in trials, with results not yet known. I have already been through at least 2 of these trials (the revlimid/velcade/dex combo) and my current maintenance regime. Maintenance regimes are still considered quite novel. Not that I needed reminding but, my doctor is very very good. He is on top of the latest drug trials and has me on the cutting edge of new therapies.

I saw Rifkin on Monday, as a follow up to my pneumonia. The testing actually showed I had influenza 3 with pneumonia. I'm still hacking but definitely feel I'm on the mend. We decided I could handle the chemo this week, so they shot me up with velcade. Some might call it kicking a guy when he's down, but I'm handling it OK. Anyway, I asked Rifkin what was up with his partners who seemed intent on having a plan for me, most likely involving transplant. Rifkin was respectful, but let me know he doesn't think that way and that he has a number of patients who have been on drug therapy for years. His view being that as long as the numbers are holding there is no reason to subject the patient to the trauma of a transplant. He said we could discuss it further at our next visit in a couple of weeks. I am content with where we are and continue to be very grateful that I landed as one of Rifkin's patients. There is a bit of luck in much of what happens to us in this life, no doubt.

Susan returned from Paris tonight, having spent the last 12 days with our friends Sigun and Joe. She had a fabulous time and has become quite comfortable in the City of Light. Sigun and Joe have introduced her to a number of their friends and her annual visits now usually involve a grand dinner party with Sigun and Joe, and now her, Parisian friends. Ah, what a life. It is nice to have such good friends in such a beautiful part of the world. Susan is now back to the more mundane life on Garfield Street in Denver.

My best to all of you. Dare I say, "spring is here"?
Dan

Bugs

Not that long ago I wrote about how there is no such thing as a little bug. This past week's experience with bugs tells it all: sore throat....cough.....fever.....pneumonia. When will this winter end? As the snow flies again in Denver I am once again wrestling with a colony of bugs who have taken up residence in my lungs. Enough already!!! Susan is visiting our good friends in Paris so Catherine took over and shuttled me to the clinic and hospital, and has monitored my fever, fluid intake, eating, etc. She has proven once again her ability to be calm in the midst of a storm. We had a few rough days but things are quieting down a bit and I suspect in another week we'll be back to normal. Susan is beside herself that she isn't around to nurse me back to health, no doubt with homemade chicken soup, but we are managing. Julia has a short break from school and will be home today to check on me. These girls continue to be pillars of strength, even though I know they get scared when I get so sick. Despite my urging to enjoy Paris, I suspect my pneumonia has been a dark cloud in what should have been an enjoyable springtime in Paris for Susan. My weakened immune system frustrates me as I know in my precancer years this latest bout would not have gone beyond a sore throat for a few days. This is an example of why I'm so resistant to talk of another transplant. A foreign donor transplant would require me to be on immunosuppressants for years after the transplant, which would make me even more vulnerable to all these bugs. I see these patients at the clinic regularly and they are visibly frustrated week to week as they can't seem to rid themselves of these infections. They do not have quality of life.

Due to the respiratory infection Rifkin cancelled the velcade this week. I was relieved as I did not feel up to dealing with the ups and downs of the chemo on top of this crud. I see him again on Monday and hopefully we'll get back on track. A few weeks ago I thought I saw spring around the corner, but it was apparently a mirage. Perhaps we'll see it by May 1!!!

Love,
Dan

Maintaining

Monday morning at the clinic. No doctor, just the nurse to infuse the velcade. Numbers report from last week looks good. IGGs are steady at 1558 (last month 1660). A few of the other markers look improved so I'm happy. Other blood work, like white count, platelets, neutrophils, hematocrit, also all look good. Maintenance is doing what its supposed to--maintaining.

Had an interesting discussion with the nurse, who read the "substitute" doctor's note from last week, as Rifkin was out of town again and I was seen by another one of his partners. As with the other partner, this one was interested in knowing "the plan." I think these guys have a song stuck in their heads, the name of which is, "transplant on my mind." Boy, talk about being in mental ruts. Try expanding your thinking guys. This doc wasn't as pushy as the other one, but still, it was obvious he thought the plan should include another transplant. Maybe they think they're going to clone me into one of my brothers because I'd be getting their stem cells. The world couldn't handle it!!!! Anyway, my nurse today tells me that he wrote in the chart, "patient adamant about not having allo transplant"--that's allogenaic, meaning, from a foreign donor--a nice way to refer to my brothers. I don't remember being that adamant, but I do know given that I feel pretty good these days, I'm not really interested in planning for a transplant. I tell my nurse this, and ask her, if she had my "numbers" would she be interested in having a transplant. A clear no is the response. One hour and I'm out of there. Record time. I'm ready to have Rifkin back.

We had a very successful fund raiser for Light the Night. We raised close to $5000!!!! A good start for my plans to exceed the $25,000 we raised last year. People's generosity continues to humble me. The longer I live the more committed I find myself to helping to rid the planet of this nasty disease. With your help we'll see a cure in my lifetime!
Love to all,
Dan

Our Stories

Tomorrow I expect to start the next round of chemo. I'm not sure what cycle this is since September, probably 8 or 9. The last two weeks of the cycle are clearly an improvement when compared to the first three weeks. The last week (week 5), which is my recovery week, i.e., no drugs, is always a relief and a reminder of what life is like without the constant fatigue. Great plans are always mapped out during this week, as I seem to forget that my motivation will languish once I enter the next cycle. Oh well, what's the saying: the best laid plans......?

My success in raising monies for the Light the Night walk for the Leukemia and Lymphoma Society has landed me a position on the executive committee of the Rocky Mountain Chapter of the Society. My success being due to all of your generosity and most especially John Sadwith's tenacity in soliciting contributions from the legal community. John has already jumped on this year's fund raising by selling tickets for a suite at the Denver Nuggets game this coming Saturday, the proceeds from which will go to the Light the Night walk. For those nonlawyers and nonlocals, John is the executive director of the Colorado Trial Lawyers Association. He has plenty to do without taking on this task, but his heart is apparently bigger than his head. For that I am very grateful, John. The fund raising is so very important for people like me. Let us not forget that but for the new drugs, velcade and revlimid, I would likely not be alive. Those drugs first came out in 2004 I believe, but were only used in very limited applications, mostly as last resort treatments. Clinical trials since then have shown their effectiveness in early treatment as well as maintenance regimes (like mine). But new drugs are necessary as this nasty disease often figures out how to get around the drugs. The Leukemia Society has set a date of 2015 as the date they want to have a cure for blood cancers. That's only 7 years from now!!!

You have all been reading "my story" for more than 2 years now (I think this blog was set up in August 2005). You may have noticed I recently put a counter on my blog. I have had over 450 visitors since March 17th. Too bad I didn't know about this counter when we first set this up. I'm sure we have had thousands of visitors over these past 2 1/2 years.

What I have learned in sharing my story is that we all have our stories. Rare is the person who gets out of this life without first going through some significant challenges. They may seem different on the surface (death of a loved one, childhood abuse or neglect, nasty divorce, health issues or disabilities, loss of a job, etc.), but deep down they are very similar. We are forced through external events to examine our selves and to learn to continue on with life; not just getting through but transcending the difficulties. I know you all have confronted and learned to live with or move beyond your own challenges in life. Many of you deal with those challenges on a daily basis. Some of you have shared, briefly, those challenges on this blog. My story is no greater or lesser than yours. Its drama has just grabbed our attention at this time. But its time will pass. (a time I definitely look forward to). My story has awakened me to your stories, to our stories. The connection, of course, being that we help each other to rise above the difficulties, as you all have done for us. And life goes on.

Love,
Dan

Three Years and Counting

First, the medical news: I've entered my 7th month of this latest chemo regime, but fortunately my dosage continues to be reduced to a maintenance level--once a week. Cancer levels (those notorious IGGs) are only measured every 5 to 6 weeks and I won't have new numbers for another 2 1/2 weeks. Aside from the fatigue and the steroid roller coaster I'm doing fine. I've certainly felt worse!

This Easter Sunday will mark the 3 year "anniversary" of my multiple myeloma diagnosis. This milepost is one of many that I set for myself as I began my treatment, including Julia's high school graduation, Catherine's college graduation, Susan and my 25th wedding anniversary, and 1, 2 and now 3 years of survival. Oh yes, there are many more. I'm sure this is typical of people with diagnoses like mine. We don't want to miss those important events in our loved ones' lives. So we're not only counting the years and mileposts met, but we're also counting the blessings we've received.

As I reflect back on these past 3 years, my most overwhelming thought and emotion is gratitude. I know I speak for Susan, Catherine and Julia when I say we are so deeply grateful to our family and our many friends who have loved and supported us. (that's all of you!). We have derived great strength from you. You have lifted us up during our darkest hours and you continue to keep us afloat. We embrace you and thank you for teaching us the true meaning of love, compassion and friendship. I admit that I am not sure I would have learned this very important life lesson without this nasty cancer. The lessons have been profound and humbling. Life has opened to us in ways we never could have imagined. At times I marvel, not at the fact that I am still alive, but that, in the midst of what appears to be great trauma, we are so happy. This 3 year anniversary appropriately falls on the feast of Easter, the Resurrection. Today we celebrate our new life. For all of you we send our wish for a very Happy Easter, as you have certainly given that gift to us.


With much love and gratitude,

Dan

There's No Such Thing As A Little Bug

Let's start with the good news. IGG's remain stable at 1660, down a bit from last month. I'm very pleased with this stability given the reduced velcade dosage in the maintenance regime. This week I had a bit of anxiety waiting for "the numbers" as Susan and I have spent the last couple of days at the clinic/hospital dealing with a workup supposedly for the flu. With me, there's no such thing as just a little bug, so when I called my doc on Thursday morning complaining of flu symptoms, we were told to get up to the clinic ASAP. My compromised immune system resulted in two days of blood work, EKG, chest x-ray, and some other not so pleasant procedures and I'm now at home with an oxygen tank and more meds than I can list. Progress feels slow but it does feel like the crud is slowly moving out of me. These things always provoke a little fear, as I have memories of little bugs turning into downward slides. Not this time. We'll be back at the clinic on Monday and I suspect the chemo will be postponed until I'm out of the woods with this flu. And at least I'm not facing rising numbers if the chemo is halted for a short time. I keep telling myself, it's just the flu--and spring is just around the corner. Yesterday it was 74 degrees; today we have snow, wind, and 25 degrees. Good bye winter, good bye flu season.

Love,
Dan

Some Days Are Like That

Started chemo cycle No. 3 today. Numbers will come in next Monday. Couldn't be examined by Rifkin as he had hospital rounds, so I'm scheduled to be seen by one of his partners. The one doc I don't like walks into the examining room. My last experience with him was just prior to my transplant and, without repeating the details of the encounter, I had a deep dislike for him. So I think, make it short and sweet and get out of here. First he tells me my white count is too low and he's not going to authorize my chemo. I object and tell him my white count has run low through much of my treatment. Finally he agrees to call Rifkin and, not to my surprise, Rifkin tells him to authorize the chemo.

Then he starts questioning me about "what's the long term plan here?" Although he won't be the one to recommend my course of treatment, I'm always interested in getting another viewpoint. Well, I certainly got that in response to my comment, "well, what do you think should be the approach?" He is a fervent believer in another transplant, as soon as my IGGs are in the low range, especially because I am doing so well---better able to withstand the assault of the high dose chemo and/or donor transplant from one of my brothers. His view of the chemo approach is that it is prepartory for transplant, not a long term treatment modality. Not a pleasant conversation as I am not interested in the transplant option except as a last resort. And I think the landscape is changing with these new drugs and they may become a long term treatment alternative. I listen and don't argue with him. He leaves and my nurse walks in. She had been in and out of the room and had heard much of the conversation. "what was that about?" she asks. After I tell her, she leans forward and says in a whisper, even though the door is closed, "I wouldn't take the risk of another transplant unless I had no other choice. People often get quite sick after sibling donor transplants. Quality of like is important." I agree and am aware that this is the second time in a month I've heard this "quality of life" comment. It makes me uncomfortable. She then tells me I'm lucky to have Rifkin as he is more informed on the advances in chemo drugs and is not as fond of transplants as some of his partners. If I didn't know it already I know it now: sometimes your health care is wholly dependent upon the luck of who you get as your doctor. Of course, when I was referred to Rifkin I had no idea what his philosophy was compared to his partners.

I think we'll ride this velcade/dexamethasone/and revlimid if necessary, until something else comes along or it isn't working anymore. Tough to get my head out of the negativity of this doctor's visit. Some days are like that. Tomorrow's a new day.

Finally----A Posting

After receiving a raft of good natured jabs for not keeping my blog up to date, here is the latest, although it isn't much.

I'm still on maintenance--velcade and steroids once a week. I won't get any reports on my blood until March 3rd (after the blood draw next Monday, Feb. 25th). I have this week off and am enjoying it immensely. The chemo regime this fall--velcade, revlimid and steroids, was so rough that velcade once a week feels like no chemo at all, to me. Until the fourth week of the cycle when I get off all drugs, and then I realize how my reality has changed. Anyway, I'm doing OK, because I am so fortunate to be able to handle these drugs without a whole lot of debilitating side effects.

I'm continuing to enjoy life, choosing to do those things that give me joy, and spending time with many friends. Can't complain about anything.

This year is leap year. I'm sure that has some significance in some calendar or astrological chart, but I have no idea what it means. Maybe one of you will enlighten me.

I'll have more to report in early March. Until then, enjoy your life.
Love,
dan

Confounding Numbers

Sitting in the examination room on Monday. Waiting to get the velcade infusion and get out of there. No appointment with Rifkin, as I saw him last week. Expecting to get the results from the blood work that was drawn last Monday. The door opens and in walks Rifkin. "uh oh", I say, "What are you doing here?" He brushes my comment off and says its a good practice when my numbers are available for him to go over them with the patient. NOT! He rarely does that, and my blood pressure starts to creep up.

So, the Igg's have risen a bit in the last month(about 250 points) , but some of the other markers are very good. He must have said 3 times, "I'm not worried." We will stay the course on maintenance for awhile, although I was clear with him that I thought we had let the Igg's run up too high last summer before beginning treatment, as by the end of that run, I was very fatigued and my back was acting up quite a bit. He said if the Igg's continue to go up (which he isn't saying will happen in the near term), he'll probably "pulse" me with another few cycles of revlimid. As he left the room he looked me directly in the eyes and said, "you have a quality of life, Dan, and that's very important." That comment told me everything. The goals of treatment are as much directed at trying to give me the ability to have some normalcy in my life, while at the same time holding the disease at bay. Knocking me down with heavy duty chemo that might temporarily drive the numbers down wouldn't give me much quality of life. Better to play the "numbers rising, but I'm not yet worried" game and give me some good days. I can agree with that.

So, that's what living with this nastiness was like this week. Amazingly, I continue to think that perhaps someday I will go in and the numbers will all be normal. I'm reminded of a blog I wrote almost 2 years ago, on March 27, 2006, titled, "Musings of a Passenger on a Roller Coaster." Now, that was a down time. My transplant had failed and I had just been kicked out of a new clinical trial for not responding to the new drug. Rifkin wasn't sure what the next course of treatment would be or whether it would work. I had been moved to the top of the list for a second transplant with one of my brothers as the potential stem cell donor. We decided, at that time, to boost the velcade with some steroids and, miracle of miracles, it worked. We have come a long ways in 2 years, my friends! I certainly don't feel that I'm still riding the roller coaster, at least not emotionally. We've moved on to a different ride. Would it be the Tilt-a-Whirl? No. How about the Carousel? No. I'm thinking maybe the Ferris Wheel. It certainly has its ups and downs, but is a much gentler ride and you certainly get a broad perspective when you're at the top. Yeh, I'll go with that metaphor, although it's usually associated with a bit more fun than I think we're having. So, staying with that metaphor, I guess we're just swinging toward the bottom, but soon our gondola will gently rise over the carnival (I certainly like that description of our many lives!) and we will exclaim, "oh, what a great view!" Until we reach the crest, we'll keep our eyes looking upward. And the ride will continue and life will be good.

Much love to all,
dan

New Year's Briefing

We saw Rifkin yesterday for the final dose of the first 4 weeks of maintenance. I get next week off and then start another 4 week cycle; provided the cancer levels are being maintained in the "acceptable" range. So far no blood has been tested to see if this reduced dosage is working and I won't have new info on "the numbers" until around Jan. 28th. Eliminating the revlimid from the regime has provided me great relief and even an uptick in energy. (or is it those notorious steriods?) I sure hope the maintenance works as a return to the revlimid would feel like shouldering a 100 pound weight for the upcoming months.

We had a nice and kind of quiet holiday, mostly with the family. The Williams family visited last week (they blog regularly--mostly Shawn and Jaike). They moved to North Carolina about 10 years ago, but they and their three girls are as interesting and lively as ever. Mike and Marta Dowell joined us and the Williams for an evening of Susan's cooking and catching up on our and our kids lives. It was great. The tree is down and tucked away and things feel like they're returning to normal; which means we feel a bit bored and are looking for a place in a warmer climate to spend a few days away from this winter weather.

Best wishes to all and may your new year be filled with joy, happiness, prosperity and good health.

Love to all,
Dan

Lightening the Chemical Load

First, if you haven't read the previous blog about Goldmine's Marathon, please scroll back to it after you finish this. The listing of blogs should appear on the right side of your screen when you log onto the blog. And if you can help him in his fundraising effort for blood cancer, please do, even if its only $25 or $50. I promise this is the last of my fundraising for awhile.

Now for the Rifkin visit yesterday: Rifkin has moved me to a maintenance dose, despite telling me that the standard protocol for the drugs I was on is now 8 cycles. (I went through 4 cycles in 3 months, which means another 3 months to meet the 8 cycle protocol). He seems comfortable with his decision and I'm elated because the maintenance regime is once a week with the velcade (down from twice), steroids once a week (the same), heavy duty antibiotics 3 times a week (the same) and NO REVLIMID (down from every day). The revlimid is what was knocking me down, so I'm expecting this maintenance dose will let some of my energy return. When I was on the velcade and steriods twice a week in 2006 for about 4 months, as I recall my energy was pretty good, and I was even able to drink some wine, something I couldn't do with the revlimid. If this maintenace holds my numbers (won't know those until next week) I'll be on it for the indeterminate future, up to 2 years is the current recommendation. Then who knows, maybe they'll have this disease figured out. It does seem that it is moving toward treating a chronic disease as opposed to just prolonging my life for a short period of time. I tried to get some info from Rifkin on some of the new drugs currently in trials, but my questions were rather summarily dismissed with, "those are in the very early stages of research". In other words, "shut up and quit trying to be the doctor." Oh well, I'll just keep asking and eventually he'll answer. (that's the same kind of perseverance that keeps me going, so no one is going to squelch it, even my doctor!)

Importantly, I got my first Monday night's sleep last night since September. Every Monday I got juiced with velcade, steroids, and revlimid and couldn't sleep more than 2 hours, on a good night. A heavy duty sleeping pill helped, but they didn't previously override the drugs. So, I am excited about actually sleeping on Mondays!

Julia returned late Friday night, after a 40 hour trip from Cape Town, through Johannesburg, Senegal, New York City, Atlanta, and Denver. She is still exhausted. We are gradually drawing out her stories. She has had a terrific experience. I will share one thought. The director of her program told the group as they were preparing to leave not to think that Africa needed their help and not to commit to coming back to bring a better life to all those in Africa who have much more difficult lives (which they do). "Enjoy your comfortable lives and the blessings that come with living in America at this time. Do not feel guilty. If you are motivated to help people, there are many people in your own country who need your help. Go help them because you have an understanding of the cultural context giving rise to their poverty and thus, will have a better chance of bringing actual change to their lives." (or maybe this is just her way of subtly telling us she's not going back to work in Africa!)

Catherine has been promoted to senior financial analyst at her consulting firm. While we are very proud of her, I couldn't help asking, "how can a 24 year old be a senior anything?"

Merry Christmas to all,
Love,
Dan

Goldmine's Marathon and First Contact

Now that's a headline that's sure to have you scratching your head. So let's start with "Goldmine's Marathon." Julia's friend, Bob Group, works as a geologist in a goldmine in Victor, Colorado (in the mountains outside Colorado Springs). Well, given my and our family's propensity for assigning nicknames to people, Bob soon became Goldmine Bob, now shortened to Goldmine. (As a total aside, here are a few of the nicknames coming out of my youth in Dickinson: Spike, Spook, Wheels, Boo, Moose, Big Frank Dickinson, Big Fella, Horrible, Hutz, Duke (is that really a nickname), Fuzzy, Sharkey, Badip, and on and on---most of whom actually read this blog). Welcome to the group Goldmine.

Anyway Goldmine has gotten himself in a bit of a bind it seems. This fall he volunteered to raise money for the Leukemia and Lymphoma Society by agreeing to run a marathon in Florida (remember he lives in Colorado Springs). Well, that marathon is due to be run in mid January. And Goldmine needs some help in his fundraising. Now from my viewpoint this effort of his is no small endeavour and it is a very generous gesture, all to help people like me stay alive. That Goldmine has a big heart! So, if you find that you still need to log some charitable donations before year end, or if you received a bigger Christmas bonus than you expected, or if you just want to give a little more to a very worthwhile cause, you can donate on line through Goldmine's website (they didn't use his nickname): www.active.com/donate/tntrm/tntrmRGroup. Let's show our support for Goldmine, who's traveling to Florida to run 26 miles, just to raise money for blood cancer research. Any amount will be greatly appreciated! THank you.

Now, what's this "First Contact" mean? Julia has touched down in New York City. We received a call this morning at 7:30 and will be picking her up tonight at 10. Her trip home will take her 40 hours to get to Denver, starting with her departure from Cape Town. We are so excited to see her, hear her stories and look at her pictures.

I see Rifkin on Monday and expect to start the maintenance regime then. I have no idea what that means, but will let you know.
Happy Holidays.
Dan

Would You Like a Velcade Glaze on that Turkey?

Yes, we started Thanksgiving day with a trip to the clinic to get the velcade infusion. Now, don't go feeling sorry for me, as I was accompanied by my mother, who wanted to see the set up at the clinic (oh, that infusion room is warm and fuzzy!), and more importantly, we returned home to put the turkey in and a few hours later we filled our plates with another one of Susan's great Thanksgiving Day feasts. Although we had a good group of friends and family, we did miss Julia. She'll be home in about 2 1/2 weeks. My appetite was not affected in the least by the velcade, as evidenced by my 3 pound weight gain (in one day!), which I'm now trying to shed.

My mother and Bob leave this morning. Bob has completed his list of home repairs (a short list this year) and Mom has taken in the "must sees" in Denver, including the new Art Museum, as well as a trip to our nationally known Tattered Cover Bookstore. They both look great and are doing remarkably well given their octogenarian status. Although we had a nice visit, I suspect they are ready to be back home, as living with 'roid boy, is about as easy as walking on thumb tacks or eggshells. Let's see, as Susan describes it, I don't speak for 3 days, and then, after an infusion, you can't shut me up. Does that mean that when I speak, they now listen? Doesn't seem to be the case. Oh well......

And as for those numbers? They continue to go in the right direction. The IGGs are now at 1596, down from 1898, and just in "normal" range, which is 700 to 1600. I know Rifkin would like to see them down a bit more, which hopefully will occur with this next cycle. I think I continue to be on track to go on a maintenance dose, starting 12/17. Maybe it will level out those ups and downs a bit. We can hope.

Time continues to be my friend, as more drugs are being tested every day. My friend, Ted, recently sent me some info on a new drug (carfilzomib), which is similar to velcade and is going into clinical trials right now. It holds much promise, as it works very much like velcade but without the nasty neuropathies, and doesn't seem to develop the resistance that the myeloma sometimes develops to the velcade. Just more evidence of the importance of that fundraising that so many of you support through your Light the Night donations.

We hope all of you had a festive holiday, are back to your preholiday weight, and are ready to cruise into the next series of holiday parties. Thank you again for all your support. We continue to be deeply grateful.
Love,
Dan

A Brief Update

I'm providing this update in response to a number of you who have emailed or directly asked me, "so what did Rifkin say at your last appointment?" So here's the latest. I saw Rifkin on Monday and he is ecstatic at the response. "Better than sliced bread," is how he described it. And he actually brought up the subject of how long I might have to continue with this regime. I will undergo an assessment (just blood work I hope) following one more cycle. He appears to want to rely primarily on the IGG levels to make a decision as to whether to continue with the current regime or to look at reducing the drugs to a maintenance dose. He said they've come up with a maintenance regime (but couldn't recite it for me). I feel very encouraged for at least 2 reasons. First, because this combo is working. Second, because there is some end in sight to the rigors of this chemo. So that's the status. I have next week off, then start the 4th chemo cycle on November 19, just in time for Thanksgiving.

and with that, Happy Thanksgiving to all.
Love,
Dan

Numbers Continue to Improve

Fortunately, it seems that the rigors of this latest chemo regime are paying off. The "numbers report" from yesterday shows the IGGs at 1880, down another 1000, and getting close to the normal range (700--1600). They've dropped 4000 points in 2 cycles. Even more promising is the movement on some of the other blood work. I don't understand much of this, but there are some other measures that are regularly tracked, and which appear to be improving as well.--some, by my reading, even appear to be in the normal range; a place they haven't been in many months. (anyone out there understand kappa/lambda light chains?) I'll get my questions answered by Rifkin on Monday. Given how hard the chemo is hitting me, Rifkin has scheduled more exams of me during the chemo cycle; I guess he wants to make sure I'm handling it OK. He seems mildly concerned about the level of fatigue and accompanying depression. Susan and I joked on the way home about just what he might be worried about. I guess it's not something to joke about, but I don't think I'm prone to "going postal", as they say. Geez, I don't even own a gun! What I do know is that staying on a course of treatment that is working is most important. So, I guess it's time to draw on the stubborn streak once again, and gut through this course of treatment.

Denver has calmed down after the Rockies trip to the World Series (no comment on the Sox sweep). We had tickets for Monday's game, but alas, the Rockies couldn't hold on to force a 5th game. It was a great run, we had a lot of fun watching, and now we're chanting, "wait 'til next year." I guess it was too much to expect that my childhood favorite, the White Sox, could win in 2005, and then the Rockies in 2007. But for all of us baseball fans, it was great fun.

Not much else going on here otherwise, as it seems I spend way too much time laying around. Julia is having the experience of a lifetime in South Africa; Catherine is studying for her Chartered Financial Analyst exam in early December and Susan is keeping the place going. My Mom and Bob will be visiting for Thanksgiving, so that will be nice.


Take care everyone, and I'll update you in another month.
Love,
Dan

IGGs Dropping

Yes, the new chemo regime seems to be working. After one cycle, the IGGs dropped from a high of 5700 down to 2900! I haven't discussed the numbers with Rifkin, just received the lab report on Thursday. But when I see him in 2 weeks, I'm sure he'll be ecstatic. So, I guess we'll be sticking with this cocktail for awhile. The results from the clinical trials were quite encouraging and I'm glad to see I've landed in the responsive category. It makes the rough days a bit easier to handle knowing it's working.

I also saw my orthopedic surgeon on Thursday to review the MRI results. (yes, there continue to be too many days where it feels like all I do is go to the doctor. A reminder that before all this nonsense started I took my good health for granted) Anyway, I would call it good news/bad news. There is nothing so acute on the MRI that would call for any surgical intervention. So, there's nothing that can be done, other than some physical therapy to give me some temporary relief., which I'll start that this coming week. On balance, I guess I'm relieved that there isn't another back surgery on the horizon.

Otherwise, life goes on and for that we are thankful.
Love,
Dan

Light the Night tops $26,000!!!!

Yes, the Light the Night contributions to my team have now exceeded $26,000, and donations are still coming in! The generosity of this very wide community of family and friends is overwhelming. The final push came from John Sadwith, the executive director of Colorado Trial Lawyers on the day before the walk. John saw that I had not yet made my goal of $10,000 and appointed himself lead fund raiser for my team--all without my knowledge. I know from the varied sources of donators that John must have managed to get word out to a number of lawyer organizations on both the plaintiff and defense side of the fence, and whether he had compromising pictures or other articles of blackmail, I don't really want to know. What I do know is that it must have taken John the better part of 3 days dogging people to up the ante, and ante they did!!! Thank you John and thank you to everyone who contributed to this very worthwhile cause.

You may remember that John was the one who set and met his goal of getting pictures of well wishes for me, from every continent. Talk about a type A personality! But what a big heart.

On the health front, I stumbled my way through the first chemo cycle, but most enjoyed last week's break from the drugs. Round 2 started yesterday--2 weeks and then another week's break. Unfortunately, it is starting to feel familiar.

Of course, I hope people don't think I'm so incapacitated that I can't mediate anymore. Not so. I continue to schedule and conduct mediations and it seems workable with the chemo schedule. I'm certainly not ready to slip into the shadows.

The MRI results are not good. My back is a mess. Of the 24 vertebra in the neck, back and lower back (cervical, thoracic, and lumbar--not the sacrum or tailbones) only 1 is normal. All of the thoracic and lumbar are or have been fractured. My back was in bad shape before diagnosis, and seems to be the site most affected by the cancer running through the bone marrow. I see my spine surgeon later this week, although I am skeptical that there is much that can be done at this point. Another kyphoplasty? (cementing the vertebra). I hope not and am not really interested in another back surgery, unless the spasming goes crazy like it did 2 years ago. I seem to remember that I had 11 or 12 fractures about 2 years ago, when I had my last MRI, so it looks like I've added another 10 or so. When did this happen? I am totally confused. I am resuming physical therapy and have committed to going to a yoga class with hopes that some stretching and massage will relieve some of the muscle pain. Don't worry, it's nothing like what I went through 2 years ago and I feel like this is something I will learn to live with. Just another complication from this nastiness. I had a nice chat with a woman at the clinic yesterday, in the infusion room. She was hunched over and had great difficulty getting in and out of her chair, walking, etc. In other words, much worse than I am. No matter how bad things seem, there is always someone you can find who is worse off...or better off. It just depends on where you want to look. I think it's easier to consider myself blessed and not look over the fence for comparisons. We'll leave it at that.

Susan is out of town at a funeral for the son of some good friends. Catherine has moved in during Susan's absence to assure that I don't burn down the house or something like that while in a steroid rage. The family bops along with a strong constitution and won't let me get away with much anymore, but they are also, in a subtle way, very protective.

Well, that's all for now. Thank you again for all your support and most especially the huge contributions to Light the Night.

With deepest gratitude,
Dan

Hold On, Rough Road Ahead

This is a short note after that first week of chemo. The year's respite obviously erased some of the memories of the chemo experience. I don't know if it's because I forgot, or because the revlimid adds a rougher component, but this week was tougher than expected. That being said, I was able to conduct a mediation mid week, and I'm sure no one was aware I was dealing with chemo, so I am encouraged by that. I know I'll adjust to the drugs, and am already looking forward to the week off. And FYI, I survived the MRI--2 hours, 15 minutes lying motionless on the steel table in the tube. While it didn't hurt, it certainly was a mental challenge. I don't expect to get the results until I see Rifkin again in 2 weeks.

Thanks to everyone for the donations to Light the Night. We've raised more than $6000!! And it seems that over the past year, many of you have forgotten how to log in to the blog. I know that because I've received quite a few emails from people this past week, offering support and encouragement. Messages in those emails used to show up on the blog. No problem. I appreciate your support in whatever form you choose to send it!

Thanks for continuing to be there for us.
Love,
Dan

The Big 3--Florida, Chemo and Light the Night

FLORIDA:
Our 25th wedding anniversary trip to Florida was the perfect exclamation point to our celebration of being married 25 years. The house we rented was beautiful, was a short 5 minute stroll to the beach, located right next to the swimming pool, and was within 10 miles of more seafood restaurants than we were able to sample. Lazy days at the beach or pool, followed by a cocktail, and then a seafood dinner were the order of the day. But the best part was one evening when Susan and I were sitting there and we realized that we were each sitting with our best friend and wouldn't want to be anywhere else. Now for me, that's no surprise. For what I've put Susan through these past years, one would have good grounds for questioning her judgment!

This trip note cannot pass without mentioning that my brother Mike joined us for a couple of days. He promptly went to the beach and sunburned himself, just like any 12 year old boy would do. The dinners out were quite hysterical as we introduced ourselves to the waiters as the 3 of us being on our 25th wedding anniversary. Silence usually followed, which invited our explanation--"my brother has been there with us from the very beginning." But we hadn't seen Mike in awhile, so it was a nice visit and we sent him home looking like a lobster.

CHEMO
We planned our trip to consume as much of the waiting time before starting chemo, so we didn't arrive back in Denver until 11:30 p.m. Sunday night. I saw Rifkin Monday morning and was off to the races....with blood draws, velcade infusion, informed consents, blah, blah, blah. Yes, we have been there before. The drug combo is so complicated I won't bore you with the details, other than to say, I get some infusions, take some pills every day, some 3 times a week, some only on Mondays. I had to go home and write down the pill regime for each day for the next 3 weeks so I don't screw it up. Now, this raises the question: who figures this stuff out? and how many guinea pigs do they use before they think they understand what the best combo and sequence is? Or I am a guinea pig? Don't answer that, please. Bottom line? 2 weeks on, 1 week off, for minimum 3 to 4 months, provided we're seeing some progress. Oh, my poor family. Susan just told me this morning that I spoke a total of 10 words all day yesterday and I haven't shut up this morning; due to the steroids, no doubt, which have had me up since 4 a.m. Anyone want to join us on this roller coaster ride? No, I didn't think so.

The bad news is that I am having more back trouble and have a new MRI scheduled for this Friday. This time they will scan the entire spine. Are they thinking I'm spineless? Although I told Rifkin precisely where I thought the trouble was (T5, i.e., the 5th vertebra of the thoracic spine), he told me he appreciated my diagnosis but was going to order a scan of the lumbar, thoracic and cervical spine (all that's left is the brain, and we all know there is nothing there, so don't bother). This scan I suspect will require me to remain motionless on this hard steel plated table inside a tube that bangs like a bad drummer, for about 2 hours. I withstood a 1 1/2 hour scan 2 years ago when my back collapsed, so I know I can get through this, but it definitely doesn't get a rating on the "I'm having fun" scale. The worst part is, I fear I won't fit into this nice little steel cubicle. It was a very tight fit when I weighed 40 pounds less!

LIGHT THE NIGHT

Last year many of you supported my Light the Night walk by providing more than $10,000 in donations for blood cancer research. Your support has helped to make available a whole host of new chemotherapy drugs that are keeping people like me alive.

Unfortunately, multiple myeloma is incurable and I will be starting a new chemotherapy regime soon. The good news is that a wide variety of new drugs, and drug combinations are now available that were not being offered last year. Discovery of new drugs and drug combinations is essential to all multiple myeloma and other blood cancer patients, because the disease often “gets smart” and drugs lose their effectiveness.

I have once again set a goal of raising $10,000 for the Leukemia and Lymphoma Society to aid it in its quest for new treatments for blood cancers. Your donation is tax deductible and will be greatly appreciated.

Many of you have already contributed, as evidenced by my having raised over $5000 already. We're more than half way there, with about 10 days to go. If you haven't donated yet, I would very much appreciate your considering a donation to the cause. A donation of any amount will be greatly appreciated, whether it be $25, $50, $100, $250, or $500. You can donate by going to my web page which has been set up specifically for this purpose. Go to this site, click on the Donate button, and follow the directions: www.active.com/donate/ltnDenver/2164_dpattersonLTN.

If you would prefer not to use the credit card pledge, you can instead send checks to me, made payable to The Leukemia & Lymphoma Society. Please send any checks to me at 145 Garfield St. , Denver , CO 80206 so I can present them the night of the walk.

Regardless of whether you donate, you are invited to participate in the Light the Night Walk, which starts at 7 p.m. at Washington Park in Denver on September 27, 2007. My team will be meeting in front of the main stage at 6 p.m. Last year we had about 20 friends show up for the walk. Let’s see if we can beat that number this year.

Thanks again for your support of this very personal cause.

We've received many calls, voice mails, cards and letters expressing your support for us in the coming months. We appreciate everything you do for us. Stay tuned.

Much love,
Dan