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

A 2 to 4 Week Reprieve

The long awaited visit was a bit anticlimatic. So I guess that's a good thing. Numbers report: IGGs 1898, up from 1756, or something like that last month. M protein is at 1.2. It should be zero and has been at 1.0 for the past couple of months, up from a low of .6 in November or December. The white count from last week is 2.1, which is low. Neutrophils, which are the most important white cells are at 1100. I think that following my transplant they needed to be at 1500 before I could leave the hospital. So, I'm definitely immuno-compromised. All I feel is tired and then more tired. I'm dosing with Vitamin C, hoping to fight off any bugs that might want to take advantage.

So, the plan? Rifkin will see me in 2 weeks to check the white count. If it's still low, he'll probably start treatment. Otherwise, if it goes up, he'll wait until my IGGS reach 2000, then he'll start treatment. He feels that the rise of 100 points from last month is not critical. Once treatment begins, he wants to do a 4 drug combination (VDRB) of velcade, decadron (steroid), revlimid (new drug approved at same time velcade was approved) and biaxcin (also known as clarithromyicin)--which seems to be an antibiotic used for serious bacterial infections like pneumonia, streptoccus, etc. Rifkin said this seemed to be the consensus of the group he consulted. He gave us the name of the doctor who just finished a trial on this and said the results were very promising. The doses of velcade and the steroid may be lower than what I was on last summer, which my nerves will appreciate. This VDRB combination has been so effective that physicians are considering recommending this instead of stem cell transplants, which is quite encouraging. Prior to these two new drugs, velcade and revlimid, being approved, there was only one treatment that was thought to be capable of driving this nasty disease into temporary remission--which was stem cell transplant.

Many months ago Rifkin told us that, while velcade and revlimid were exciting developments, drug combinations held even more promise. During this 8 months without chemo, a number of clinical trials have reported their results (results are only published when the trials are completed) and they hold much promise in terms of extending longevity, time to disease progression, etc. So, the longer I go without treatment, the more the doctors know.

And, Rifkin released me to travel to New York this week to visit Susan's cousins, Arlene and Jim, and our friends Sigun and Joe. Rifkin did not enthusiastically encourage us to go, rather I would say he reluctantly approved--no doubt due to the low white count, but on the other hand, wanting Susan and me to have a life. So, with that in mind we intend to "have a life" by going to the ocean for a week. Once again our friends and family are taking care of us, as they have for the past 2 years. I guess I'll provide a new post in about 2 weeks just to let you know what the status is.
All my love,
Dan

Hold the Treatment, Let's Consult the Nation's Experts

We had the much dreaded meeting with Dr. Rifkin this afternoon. I had blood drawn on Tuesday so we could have the most current "numbers" to discuss. I had with me a color graph of my IGG's since this nonsense began (compliments of my daughter Catherine), research from the many recent clinical trials (thanks to Ted), and 3 pages of questions. The IGG's are up to 1786, a jump of 136. Hematocrit is down a bit, but I'm not anemic. Everything else is OK. We reviewed the many treatment options, discussed my questions, and arrived at the following decision: Rifkin wants to present my case as part of a presentation he is giving in Houston on March 29th. He specifically intends to discuss it with the nation's myeloma experts as part of their prep the night before the seminar. (He liked Catherine's chart, thought it was "helpful" and, who knows, may use it). His goal? To arrive at a treatment option that (1) could be used long term, (2) is not toxic, and (3) controls the myeloma. Who could disagree with that? As a consequence he is not going to start me on any treatment right now. He is unconcerned about going another month without treatment, even though the numbers are drifting up.

Just as I have the greatest family and the most fantastic friends, I have the best doctor. Susan and I love this guy. We will have the nation's experts consulting on my case! So, my friends, I have a respite. We continue to live month to month and that's OK. It brings the focus to the day to day and keeps the mind from running too far ahead of our lives. Amazingly that can be the source of great joy. Any moment you choose to live in is most probably joyous. So we will stay there for now, and if we are strong enough, we will stay there forever.

Love to all,
Dan

Shaking Hands With Disappointment

"I'd like to shake your hand, Disappointment. Looks like you win again." Excuse my theft of the Neil Young lyric, but there is no other way to describe the feeling today, when advised by Dr. Rifkin that the inevitable is upon us--a return to chemo. While we don't have the numbers from today, the trend is such that he is "worried". I suppose there is a chance that the numbers report on Monday could turn the other way and hold off treatment, but there was not much optimism about that being the case. The trend is upward with the IGGS, as well as the M protein, two critical measurements. Rifkin wasn't ready to talk in much detail about the options. We have an appointment in 3 weeks, to review options, data, and to plan the course ahead. The appointment is on March 22, a mere 2 days before the 2 year anniversary of the diagnosis. I will be doing my homework so I can make a recommendation to him. It will likely be velcade and some other drug, either a steroid or another chemo drug. God, he must hate me as a patient!

I'm having more difficulty handling the news than I would have expected. Despite the prostate surgery, and the recovery from that, this past 6 months has been a welcome return to some routine in our lives. I have been able to keep out thoughts of returning to treatment and generally enjoyed most of my days. Now that a return to treatment is likely, all the memories of being on chemo flood my mind. Stated simply, it's just no fun. Can the family handle more 'roid rage? And of course there is concern that treatments won't work and we'll face more difficult decisions. The mind loves the drama. I guess I'll have to get my mind back into shape to steele it from these flights into the valleys of pessimism.

But to give things a different perspective: A year ago I was bracing for yet another transplant, using the stem cells from one of my brothers. Through that lens, today seems OK. I told Suz today I need my two days to get over this news and get my head screwed on straight. I'll come around soon. In fact, as I write this to my silent bloggers, I start to feel better already. The connection this blog has given me to so many people around the world continues to lift my spirits. The wonders of cyberspace.

Next week Susan and I will be in Scottsdale, AZ. My friend, Joe Epstein, whom I'm mediating with, offered us his home ithere. All this was planned before we had today's news. We must be in sync with something. So that will be a nice respite before life turns more difficult. Joe has been a godsend. He has kept me as busy as I can be this month with mediations, which is a tremendous help with the dental bills, health insurance, etc. Plus it gets me out of the house and gives me something to do. I continue to be amazed at how our friends still take care of us.

We are experiencing first hand the country's health insurance crisis. Because my health insurance is keyed to my employment and there is always the risk of my not being able to work at all, losing my health insurance and having to go on Medicare, we've had to get Susan and Julia on a private policy (so she wouldn't be without insurance if I went on Medicare). Not surprisingly, at her age, she has a few health issues, which the new insurance company has used to increase the standard premium by 75%!!! But we had no choice. We are glad her insurance is no longer linked to my employment, although we pay dearly for it. I don't know what people do who don't have the means to handle these costs. No, I do know what they do--they don't have insurance.

We are doing OK. We will let you know what we learn at the 3/22 appointment. Stick with us. We will continue to enjoy life, despite today's news. We've dealt with worse and we still love our life and all those wonderful people who fill our lives with such joy.

Neil Young ends his lyric about meeting disappointment with this, "But this time might be the last." He goes on to say, "I'm savin' the best 'til last; let's leave this all in the past." Yes, maybe this disappointment might be the last. And if it's not? Well, we will continue with this journey. Love to all,
Dan

Triple Crowns and Other Fun

One aspect of chemo that no one ever told me about was the effect on the salivary glands. It seems that chemo can disable them, as it has done with mine. And without a good amount of saliva being generated, well, bacteria finds places to reside. So, after my first visit to the dentist since before the transplant (I couldn't go when I was on chemo) I now have 6 crowns coming. I've survived 3 last week, and am scheduled for 3 more in a couple of weeks. The fun just never ends!

Speaking of which, I also will be demanding a refund for the flu shot I got this year (as soon as I can remember where I got it) as I now have the flu. Of course, with me, any illness gives rise to major concern, so Susan and I spent this morning at the clinic and the hospital for the complete workup. Throw onto the flu a touch of pneumonia and we're having some fun now! But I'm on Tamiflu (Catherine advised that I should try to squirrel some away in case bird flu hits) and an antibiotic and expect I'll be improving in a few days. I think Susan has a touch of the flu also, but she didn't get anywhere near the attention I got, nor the drugs. So she's just suffering it out.

Other than that, we're doing just fine here.

Normalcy Continues

Oh, those dreaded IGG counts came in this week: IGG's are now at 1596, up from 1433. Still in the normal range, which tops out at about 1680. As I've said before, we certainly don't like the upward movement but it seems to be inevitable--at least according to Dr. Rifkin, who seems compelled at every visit to advise me, "you know it's going to come back". I continue to reject that in my mind, but it's hard to argue with as I watch the numbers going up. On a positive note, there are other indicators that Dr. Rifkin is watching which are improving. One in particular is the Kappa Lambda ratio of the light chains in the blood. Now, if anyone of you out there understands what that entails I would appreciate some enlightenment. I have tried to figure out what this ratio means but I just can't get it. Anyway, that ratio has been off since diagnosis and now is very close to normal. As with other visits, given that the IGGs are still normal, I know I have at least another month without treatment and probably two.

I also had my checkup with my urologist and everything continues to be fine on that front. PSA is 0.

My mediation practice is set to start this next month. I'll be working with a very experienced mediator here in town, Joe Epstein, and he is rapidly filling my calendar. As I only want to do 1 or 2 mediations a week, he has already filled my February calendar. I'm still struggling a bit with letting go of the identity of a trial lawyer, but am confident that once I fully extract myself from my law firm and start my new life as mediator it will be fine.

The family is doing well. Julia is applying to study abroad next year in South Africa, working with HIV/AIDS clinics there. South Africa certainly has its problems, not the least of which are crime, muggings, etc. But she is determined to work in a third world country and ultimately we left the decision to her. Catherine continues to love her job and is learning more and more about investing (but she still refuses to advise me about my retirement portfolio). Susan now has a job--working as my Chief Operating Officer in my mediation practice. In order to get the health insurance coverage I need, my business is required to employ 2 people. So she is in charge of the bookkeeping, billing, banking, scheduling, filing, etc. She seems happy to do it, but maybe that's only because she knows this business will get me out of the house and she is willing to do anything to see that happen!!

The two year anniversary of my MM diagnosis is just around the corner--March 24. It's hard to believe it's been two years and it's harder to remember what life was like before cancer. I remember when my sister was here in the fall of 2005 just after my transplant and she asked me if I ever had moments where I forgot about having cancer. Sadly, I responded no. I can now say I do have those moments, maybe even hours now where I am engaged in some activity and oblivious of the fact of my disease. I guess one could call that progress.

So, in closing, thanks to all of you who continue to hang in there for us, who silently check the blog, who call and write, and who pray. We know you're out there and we are thankful every day for the blessings that are our friends and family.
Love,
Dan

Those Troublesome Numbers--Rising But Still "Normal"

I managed to get through our snow-packed streets last week and saw Dr. Rifkin for my monthly checkup. Everything fine at the checkup, white count, hematocrit and platelets are all good. Returned yesterday to get 4 immunization shots due to the fact that my transplant wiped out most of my immunizations, like diphtheria, tetanus, Hepatitus. I also picked up my myeloma numbers: IGGs are at 1433, up from 1207 last month. Still in the "normal" range, but I personally don't like the drifting upward. That being said, the doctor has not said this is a trend or that treatment will soon be resumed. We'll just wait to see what next month's numbers show.

So we are once again challenged in our mental discipline. We really can't contemplate returning to the chemo, whether it's the 'roid rage, the fatigue, the shooting pains, the insatiable appetite or some other unpleasant aspect of treatment. This respite has felt so good and given us a taste of the normal. Of course, we want it to continue. So we steel our minds to stay in present, to enjoy each day, and not to stray forward or to indulge in the anxieties and worries of what might be coming. Today we are happy. Isn't that all that matters?

We had a fabulous holiday. We hooked up with Julia on 12/22 on our way to the Broadmoor for our second annual respite in honor of Susan's birthday. We indulged ourselves with food, relaxation and a trip to the spa. Christmas was fairly low key but very relaxing as was the whole holiday season. Julia is home until Jan. 20th. Catherine continues to love her job and I will soon be moving into a different line of work--mediation, as it does not appear I will be able to do the work of a trial lawyer. Those plans are in the works and should be up and running in about a month or so.

We failed to get our Christmas, New Year's, or Holiday letter out this year, for the second year in a row. But I feel that we have stayed in touch with all our friends and you are fully up to speed on this past year's events. We are happy to be bringing in a new year and to see this past year in our rear view mirror. We continue to be thankful for the support of family and friends and are truly enjoying each day. We wish you all a happy, healthy and prosperous new year.
Love,
Dan