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

The Journey Continues--After A Trip to Florida

No surprises today at Rifkin's office. IGGs are up to 5000. Treatment is scheduled to start September 17th, the day after we return from Florida. Yes, we are going to Florida. Susan and I agreed in advance of the appointment that we would not press the case for going to Florida, but rather would let Rifkin make his recommendation and we would accept it. While he's not at all happy with the rising IGGs he does believe in our having a life. When asked what risk I would face by delaying treatment 3 weeks, his response was simply: "you'll be at risk for hurricanes." So we are, of course, very happy that we'll have 2 weeks in sunny Florida to celebrate our 25th anniversary, and rest up for the next onslaught of chemo.

Following Rifkin's exam, 2 nurses gave us the rundown on the chemo I'll be receiving: VDR--velcade, dexamethasone (steroids), and revlimid (a thalidomide derivative), along with some type of antibiotic. So, we got the list of horribles (possible side effects): fatigue, neuropathy, blood clots, muscle cramps, diarrhea, constipation, and some lesser ones. Nothing new, but a bit sobering after not having to deal with these issues for the better part of a year, and while the 2 chemo drugs bring a greater chance of efficacy, I have the sense they bring an increase in side effects. The plan is to treat me with 3 or 4 cycles of chemo--3 weeks per cycle and then reassess. The cost of this new treatment??? An astonishing $10,000 per week.

Following that course of treatment Rifkin suggested we'll talk about another transplant. I still can't bring myself to think about going through that again, so I pressed him on whether the new drug combos would, in fact, decrease the chance for another transplant. He was encouraging, but noncommital. The standard of care these past 5 years or so is to have 2 transplants, as that has proven to be most effective in stemming the growth of the disease for any significant period of time (2 to 3 years). But the toll is high and the recovery excruciating. Besides, my autologous transplant (using my own cells) was not successful--according to Rifkin at the time. Now, it seems he wants to reassess that impression in light of my last year of stability--or look at a transplant from one of my brothers, although he said he would prefer not to put me through that, as a transplant from a foreign donor (yes both of my brothers are "foreign" to me!!!), is even more difficult to deal with.

Are we having fun yet?? I am still of a mind that the fast paced research will bring enough drugs on the market that I can be on a maintenance dose for the rest of my life, rather than having transplants every 2 to 3 years. The trick with that approach is to find drugs that the myeloma doesn't figure out how to work around. It is apparently a smart disease--certainly too smart for my own good!

So, I'm working on adjusting my mind to deal with the return to chemo, as well as an unknown future. (but then aren't all of our futures unknown?) I'll get there and going to Florida with my bride will certainly help. I guess it's also time to kick up that meditation practice, even though I have maintained my daily practice, I found that adding an extra hour of meditation helped keep me out of depression during the rough spots. Kind of the opposite of the mob's "going to the mattresses", I guess.

And Julia leaves for South Africa on Wednesday. Boy are we going to miss her. This is such an adventure--3 1/2 months on the other side of the world! Her blog address is southafricanstudies.blogspot.com for those of you who are interested in following her adventures. Tune in as it will likely provide some interesting narrative about the South African culture. What would we do without the internet?

Catherine will have to carry us while Julia is away. We expect that we'll probably see her every day for her morning cup of coffee with her parents before she heads off to work, as well as for at least one dinner a week. Both girls are already stepping up to keep their Dad in good spirits through this next ordeal, with funny greeting cards and "you'll get through this Dad" words of encouragement. Susan is similarly positive and none of them will let me spend any time worrying about how I will handle this next round.

So there you have it. It has been a nice break but I guess it's time to get back to work. I hope you all are ready, as your shoulders proved quite large and strong for us in the past, and we may need them once again. Bill Withers' song "Lean on Me', comes to mind:

Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there's always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

Our family continues to marvel at the hidden blessings cancer has given us. Life has blossomed into an amazing experience, and after all, isn't that what we all want out of our lives? So, on to our next adventure. We're sure glad you're with us on this journey.

With Much Love and Gratitude,
Dan

The Run is Over

Much to our surprise, given how I have generally been feeling, and the good bone marrow biopsy, we had a difficult visit with Rifkin today. The IGGs have spiked to 4200, up from 2900 last month. I pressed him on how the IGG's could be so high, given the bone marrow biopsy. It seems that myeloma is "patchy", meaning that the bone marrow biopsy can tap a lower concentration of myelma and give a distorted view of the degree of myeloma. And I thought the bone marrow biopsy was the definitive test!

I told Susan they should have put me in a blender and shaken me up before the biopsy to make sure the myeloma was fully diluted. She didn't think I was funny. Anyway, the IGGs are concerning enough that we will be starting treatment--the only hitch being our 25th anniversary trip to Florida planned for early September. I have another visit with Rifkin in late August and if things are relatively stable we'll get the green light and I'll start treatment as soon as I return. Otherwise, our trip is cancelled, which would be the 3rd cancellation for me this year. Does it seem that the message I'm being given is that I should just stay home?

The treatment options are also more narrow than I expected. Although there are new drugs being tested, the criteria for the clinical trials generally exclude you if you've had 2 cancers, so my prostate cancer excludes me from participation in at least one trial, and may exclude me from the very promising HSP-90 trial. We are most likely looking at the 4 drug combo of velcade, revlimid, dexamethasone (steroid) and an antibiotic.

While difficult to hear, it is not as if I ever thought my cancer was gone, or that I would escape further chemo. We will deal with this, as we have with much worse over the last 2 years.

We continue to be blessed by the support of family and friends. My brother Tom and his daughter Gina were here over the weekend. Gina is a wonderful young lady and we were very glad to be able to spend some time with her, and for our "girls" to have the chance to meet her, as young adults. My cousin Sheila Carpenter and her daughter, Diana, arrive today for a short visit. It has been years since I've seen Sheila and we are looking forward to her visit.

Julia leaves for a semester overseas--South Africa, at the end of the month. We will miss her greatly but are excited for her and know that she will return a very changed person.

And our lives go on. As I've often said, it's certainly not the life I would script for us, but it is a life. And all of you make it worthwhile.

Love,
Dan

Still In the Plateau

Apparently the deeper in me they go, the better I look. Even though the IGGs are on the rise, the bone marrow biopsy shows my cancer levels at 10% or less. For a few points of comparison, my last bone marrow biopsy in December 2005 showed my cancer levels at 39% --after transplant, and when I was first diagnosed in March 2005 they were are 67%! This month's skeletal survey also did not reveal any new lesions, only evidence of the old ones which Rifkin says it takes 10 years or more for the body to repair. So what does this mean, you ask? NO CHEMO! I must say that Susan and I were completely taken aback by the news, as the buildup over the last 2 months, with the IGGs rising, the tests increasing, the discussions focusing upon particular types of treatment (remember the 4 drug cocktail?), all lead us to believe the inevitable was upon us. Not so. Rifkin does not want to treat me until he is sure my myeloma is progressing, and at this point he believes I am still in the plateau. He is also quite enthusiastic about a new drug, HSP-90, a heat shock protein treatment, that is a nontoxic chemo treatment. He is involved in the phase III trials for this drug, and he says it holds much promise and would like to use it with me provided it moves through the approval process rapidly. So by the time I see him again in early August, I will be 11 months without treatment. Amazing, truly amazing.

The month to month nature of this life does take its toll, however. I went into somewhat of a depression this weekend in anticipation of the beginning of the chemo wars (rare for me). Susan spent a restless night Sunday night and prayed most of the night while lying in bed contemplating our next rounds of chemo. And in an instant the fears and concerns are erased, ableit temporarily. So while we are delighted with the news, we feel we continue to be in a holding pattern as Rifkin is quite clear treatment will resume at some point.

You bloggers may remember our friends Sigun and Joe Coyle, who often posted from Paris during the past few years. They are here visiting and Sigun prepared one of my favorite meals for Monday night, either to soothe or to celebrate. Well, we had a celebration last night, complete with champagne! We toasted our good fortune for having so many friends and family who have carried us through these rough waters, and to whom we give much credit for my continued existence "in the plateau". Here's to you!
Love,
Dan

Ouch!

Yes, ouch, is my response to the news yesterday--IGGs have jumped to 2650, a rise of more than 700 points. The nonchemo period has come to an end. Before I commence treatment I have to undergo extensive testing to "restage" my disease, including the not very comfortable (to say the least) bone marrow biopsy, and the skeletal survey to see if I have any bone involvement, plus much more blood work. Even though we had kind of decided upon a chemo cocktail last visit, new data has brought more options into the picture. Rifkin is making yet another presentation on multiple myeloma to some cancer society in mid June and he said that when he sees me again (on July 2) he will have all the latest data from all the clinical trials around the world at his fingertips. So who knows what they'll put in me come July.

Although the news comes as no surprise, I find I'm struggling to deal with it. Over the years, life has taught me that difficult times can be dealt with and that eventually the difficulties subside and life returns to some form of what it used to be. Not so with this disease. There is no going back, no return to that easier time. No, it seems we must just move forward and accept a life with a very different, much more coarse texture. The struggle these days, as with most days since the diagnosis, is mental, working against old notions and habits and accepting the new pattern.

And for a lighter note: I had a great time back in Dickinson last week. My mother and her husband, Bob, are doing well. My sister Kathy and her husband, John, came down from Minot and spent a few days there as well. I think the average life expectancy for people in Dickinson is markedly higher than the rest of the country, as you can feel the pace of life slow down when you drive into town. They just take things slower there. So we took it pretty easy, leisurely coffee in the morning, walks around town, and going out for steak at the Elks club.

We also had the chance to see my uncle, Woody Gagnon, who is now 93 years old and doing remarkably well. We spent many holidays with the Gagnons over the years and it was nice to spend some time with Woody and his son, Ed, whom I haven't seen in many years. Ed's brother, George, is responsible for bringing me to Colorado way back in the mid-70s, when I taught at the Open Living School in Evergreen, Colorado, where George was the principal. I fell in love with Colorado and determined this was where I wanted to live. George, on the other hand, has fled the state--to teach at Berkely. (just kidding George, no you didn't flee the state.....at least not that I know of!)

Susan, Catherine and Julia had a more glamorous Memorial Day getaway in Palm Springs, with cousine Eileen. They, too, took it easy sunning at the pool or going out to eat at more elegant restaurants than the Elks club. They arrived back fully bronzed, rested, and grateful, once again, for the generosity of cousin Eileen.

So with a slight adjustment of my mental state, which I know will come in a few days, I will once again know that life is good. We continue to give thanks every day for all the friends who support us through this very different life. I'll check in after the July 2 visit with Rifkin. Until then, we send all our gratitude for your being in our lives.
Love,
Dan

White Count Rebound

We had a nice visit with Rifkin today. The blood work was only of the basic tests, not the myeloma numbers--the blood work is known as a CBC or Complete Blood Count. Remember, my white count was very low 2 weeks ago? Well, the white count has rebounded and is now in the normal range. Even more encouraging to me was the fact that the hematocrit is back up. Hematocrit measures the number of red cells and the size of the red blood cells. The number is expressed in a percentage. Low hematocrit is associated with a number of disorders, including multiple myeloma. My hematocrit has never been normal since my blood work was first done in March 2005---until now! It has hovered in the low 30% range, but started to rise a few months ago, only to drop last month. Today, for the first time in 2 years, my hematocrit is in the normal range (42% for the scientists among you bloggers). Now, this doesn't mean I don't have myeloma, as we know those numbers have been rising, but it does mean that at least for the time being I continue to hold my own. This was the best CBC I have had since all this nonsense started, so we're feeling pretty good today. The roller coaster ride is being nice to us today.

We also had a chat with Dr. Mattous, who now heads the transplant program at the cancer center. He was also very encouraging, telling us that they are testing a number of new drugs that appear to be very promising. He said Rifkin will talk to us about them when it is time to restart chemo. The drugs don't have names yet, only numbers assigned, so I don't know what they're looking at. All in all it was a nice visit.

We canceled our planned trip to New York a few weeks ago, as I was just too tired and, with the immunosuppression, was very concerned about picking up some bug, or tiring myself out with all the travel. We were so sorry to miss seeing Arlene and Jimmy, as well as Sigun and Joe, and our other friends in East Hampton, Alexandra and Karen, but felt compelled to be safe.

The girls, including Susan, are headed to Palm Springs in a few weeks for the annual girls Memorial Day Weekend. Eileen treated the group to a trip to Scottsdale last year. This year she has reserved a suite in Palm Springs and the girls bagged some cheap fares to San Diego, so off they go for a long weekend (or is it a week) in the sun.

I, on the other hand, will be going home to see my mother during that weekend, now that I'm no longer immunosuppressed. I haven't been back to Dickinson in 7 years, so it's about time. Mom, of course, is ecstatic. Dickinson is full of so many friends who have been praying for me, calling, sending cards, and emailing during these past 2 years. I, too, am excited to be going home.

Every day I count my blessings for my life and for all of you in my life who have carried us through this difficult time. You have shown me that the love of family and friends is truly a very powerful force.

Much love to all,
Dan