Let's Get One Thing Straight

A number of people have suggested that my decision not to return to Arkansas, but to continue with further treatment here in Denver, might reflect that I'm quitting. NOT SO. There is no quit in me. Have we (you) forgotten the 15 vertebral compression fractures, 2 back surgeries, prostate cancer, stem cell transplant, etc? It took one year to find an effective chemo regime. We have made a variety of very difficult decisions regarding my treatment, including the decision to go to Arkansas for treatment. So why have I decided not to return?

The initial plan was to go to Arkansas for a double auto (my own cells) transplant. My cancer took this opportunity to get very aggressive and the initial plan had to be scuttled for much more aggressive treatment, concluding with the heaviest chemo regime one can get for this disease (the super beam plus--9 chemos in high dose). That was only marginally successful and the IGGs are now on the rise again. Because the super beam can only be given to a patient once in his lifetime, due to the risk of pulmonary disease, another auto transplant is not viable at this time. The only other type of transplant is a mini allo (using one of brother's stem cells). I am very fortunate that I have brothers that match the 10 important antigens. But there are increased risks with this type of transplant because you are being given someone else's stem cells--not unlike any other organ transplant. In addition, for this type of transplant to be effective, my cancer levels must be considerably lower than they are now. That will have to be accomplished through some drug regime. Since I have had most of the potentially effective chemo drugs, finding a new effective drug is the first major challenge.

In this regard I do not perceive much difference between Barlogie or Rifkin as the treating doctor. While they both know what drugs are currently available as well as clinical trials that are being conducted, unfortunately neither knows for sure whether any of those drugs will work on me. Hit or miss/trial and error? Call it what you will, I'll continue to be the guinea pig. In addition, Barlogie isn't very fond of mini allo transplants and one time told me "We don't do those." In fact, they do, but not frequently. On the other hand, Rifkin has just completed a clinical trial of mini allo transplants, the results of which are not yet published, but the inside word being that all patients are doing well at two years post transplant. So, this guinea pig thinks he will do best in his own home environment, with his family and friends around, and the chance to be living some semblance of life while going through this next phase of treatment. In that regard, I've already attended my first CTLA officer meeting, and am considering whether I can conduct a few half day mediations starting in late June or July. Life must go on.

A long winded way of saying there is no giving up in me. I still have too much to do. And with that, I think I'll take a spin on my bike.
Love,
Dan

Charting A Future Course

My recovery from the beam chemo and transplant continues to go slow, although we are making progress. Typically the patient's white count, red cells, and platelets get close to normal ranges within 45 to 60 days. I'm 50 days from transplant and my blood counts are still quite low. I've needed growth shots to jump start my white count as well as transfusions of red cells and platelets. But, I am producing cells and the time between shots and transfusions is lengthening so my counts will eventually stabilize.

The news on the effectiveness of the chemo and transplant is not great. Even though the cancerous levels of plasma cells was cut by 50 %, my IGGs and M protein are now trending upward, rather than downward. (IGGs at 3670 and M protein at 3.0). So were do we go from here?

We've had a couple of meetings with Dr. Rifkin and he advises that no further treatment can be given until my blood counts recover. Plus, I now have thrush and this full body rash, although both are improving, albeit slowly. I agree with the advice of no treatment at this time as I am just too worn out to handle any treatment at this time. So, the planned return to Little Rock on June 3rd is not going to happen. Susan and Julia will be flying back to Little Rock next week to pack up and drive the car back.

I have told Rifkin I want to continue with further treatment here in Denver, rather than Little Rock. My myeloma has become very drug resistant. I have received almost every drug available over the past 4 months and we've made some but not great progress. Because my cancer levels are still fairly high, another transplant is not an option. Only when the cancer levels are reduced can we explore another transplant--and that will probably involve use of one of my brother's stem cells (called a mini allo transplant). I have asked Rifkin to collaborate with Barlogie and discuss what drugs, if any, might work to bring down my myeloma levels and to come up with a plan. Rifkin's approach is one step at a time: first, get my blood counts stable; next perhaps give me steroids every other day to try to hold the IGGs stable; third, come up with a treatment plan to bring down the cancer levels (this is the challenging part given the few drugs, if any, that might work that I haven't already had and thus developed resistance to.)

These are tough times, but as Rifkin said to me earlier this week, "you're a tough guy". So we proceed, one step at a time. And it will be so much better to be going through this while at home. We have navigated rough waters before and I am confident we can do it again. We are also mindful of the fact that we couldn't have done it without all of your support, for which we are very grateful.
Much love to all of you,
Dan

It Don't Come Easy

"Got to pay your dues if you want to sing the blues, and you know it don't come easy." (Ringo Starr). That lyric is what comes to mind as I think about our first 10 days back. Monday's visit to the clinic came with the surprise of a plummeting white count and low red blood cells. Troubling enough numbers that, even though I was not scheduled to see Dr. Rifkin, the nurse went and got him. He didn't seem unduly phased by my condition, attributing it to the heavy chemo I've received and saying he's seen it before, calling it "classic Arkansas slow recovery". So I've had daily visits to the clinic this week, multiple transfusions, and resuming growth shots to boost the white count. A full body rash appeared on Tuesday and we've been dealing with that. Other than all that, it's still great to be back home. The temperate weather and sunny skies lift my spirits and are everything I missed while in Little Rock.

Julia graduates from Colorado College on Monday. She'll be getting a degree in public health. She's had a great experience at CC and I know she will miss it. She will be working as an intern at the Colorado Dept. of Health for the summer (paid internship), so she's already gaining experience in her field. I guess she's now on her way. To where, we don't know.

Even though I don't get out much due to the low white count and fatigue, it still feels so good to be home. Thank you everyone for all you did for us and continue to do for us.
Dan

Home

We arrived back in Denver Wednesday night. Hallaluha! The last 2 days have been beautiful Colorado days: sunny, blue skies, temp in the 70's. Everything I missed about the Colorado climate was here to enjoy. Getting "discharged" from the Myeloma Center took some work, but when a nurse suggested that the doctor was running late and I might have to wait an extra day I went into action, resulting in another 8 hour day there running to and fro, but finally getting discharged at 6 p.m. on Tuesday.

So now what? I'm exhausted and have about 2 to 3 hours of energy to engage in conversation or low key activity, then I seem to start fading. I've lost 40 pounds, mostly muscle (yes I had some) and so I'm plotting how to gain some strength. Right now walking twice a day plus multiple trips up the 4 flights of stairs in our house are my exercise regime.

We have to visit the clinic twice a week to have my blood tested and sent to Little Rock. They will be monitoring my cancer levels. We could be home for as long as a month provided my "numbers" don't start running amuck. Then back to Little Rock for testing and another chemo regime, which hasn't been defined for us yet.

I never expected that I would miss my home and seeing friends as much as I did in Arkansas. Four months of daily trips to the clinic and feeling like my whole world was "treatment" was mind numbing. We felt like we had been yanked out of our lives and plunked in some alternate universe. It is so refreshing just to be back, if nothing else, in proximity of the lives we had been living. I do hope that further treatment can be administered in Denver so we don't have that added burden of being so removed from our very large support group.

So, for now, we are enjoying being home and seeing friends.
Dan

Reduction But Not Remission

The "numbers" days are always nerve wracking. Results from the bone marrow biopsy done yesterday show the 90% plasma cells knocked down to 48%--a 50% drop. From talking with the nurses in the transplant unit, this response (50% reduction) is very good and about what they expect, so the Beam did its job. Our journey began with hopes of a double transplant and remission but we've hit a few bumps along the way, not the least of which was the spike in the plasma cells that the first 2 chemo regimes hardly touched. I am quite pleased that we've made some progress and am adjusting to the idea that this is going to be a longer treatment process in Arkansas than expected. (Our love affair with Little Rock will continue, I guess) That being said, given the need to recover from the "super beam" chemo, and transplant, we'll be returning to Denver sometime next week for a few weeks of recovery. After that we'll have a return visit to see Barlogie and decide on the course going forward and the need for continued treatment in Little Rock. That will depend on where my numbers are at that time and a variety of other variables I'm sure I'm unaware of. We do know that it's a long road back from a transplant. I don't know whether this transplant has been more rigorous or not, but it certainly has presented its challenges. and, as happened 4 years ago, I've lost all my hair, and dropped 35 pounds. So, don't freak out if you run into me.

Frankly I wasn't expecting to be "released" so soon. But my white count jumped in the last 2 days--we're now over 2! And other blood counts should start to stabilize. I'll be monitored at the clinic at home, with twice weekly shipments of blood to Arkansas for evaluation. I haven't fully processed what returning to life in Denver and still being tethered to Little Rock is going to be like. We will sort those things out as we move forward. I have many thoughts racing through my head at this hour but am mostly reminded that when first diagnosed I was told this was incurable but treatable. This latest treatment has taught us much, humbled us more, and made us more grateful for all of you for the never ending support during these past months. Do not underestimate how much your contact helped. I could not tell you how many times Susan and I said to one another, "what would we do without our family and friends."

Thank you.
Love,
Dan

A Difficult Week

This past week has been a challenge. Due to the bacterial infection in my GI tract they loaded me with more antibiotics and drugs than I thought one could handle. All done to prevent any further bugs, as well as to treat the out of control bug. Of course, the drugs did their job but also had their own side effects. This past week I got hit with all the side effects one could imagine. I'll spare you the details. On Friday, after a sleepless night I went in to the clinic and said they had to take me off some of these drugs as I wasn't sure whether they were making me better or making me sick. No resistance to my request and the drug regime was modified. And not surprisingly, I'm feeling better.---relatively. Most encouraging to me is that fact that my appetite is gradually returning. I went for 2 weeks where I could not keep anything down and, of course began to fret that I would just get weaker and pick something else up. The nurses didn't seem concerned, as they filled me with fluids, potassium, etc. every day. Anyway, I can actually taste food again and expect that getting some nutrients should help the recovery.



We're still watching the white cells, which are moving upward, but quite slowly. But eventually they will get to normal levels. They are the barometer of the transplanted stem cells engrafting into the bone marrow. I'm recovering slower than expected but the counts continue to move upward so we're told to just be patient. Otherwise the days are quite boring. We typically spend 3 to 4 hours at the clinic where I get infusions of antibiotics, platelets, etc. We're usually sent home with some bottles of potassium that Susan has to change every 5hours. And so it goes.


Julia will be joining us tomorrow for another 5 days, which will be a nice respite for Susan. And as for Susan, I told her today that she is amazing. She is full of energy, always in a good mood and cheers me up every day. Of course, she has made many new friends. The story I like most is the guy who tried to pick her up at church---no kidding. He sat very close to her, tightly held her hand during the Our Father, and then, (in Spanish) asked her to put her phone number in his cell phone. Gotta watch out for these Arkansasans.

Here's to spring bringing us new life.

Dan

FIrst Numbers Report

The news we've all been waiting for: Is it working? Yes. Today we received the report of IGG levels and M protein. IGGs have dropped from 5300 to 2500. M protein dropped from 3.6 to 2.1. We know more comprehensive studies will be needed over the next couple of months, but for now we are very pleased to know that it appears the beam is killing off the myeloma cells. Typically over the next couple of weeks/month the downward trend should continue. My white count continues to languish at 0.01.

As an aside, I share this incident from the weekend visit at the clinic. Given the nonmovement of my white count, my nurse decided to talk to the on call doctor. This young doctor recommended that I have a bone marrow biopsy on Monday to determine whether I had enough stem cells, and if not, then to give me more of my stem cells. A supplementary transplant????? Anyway, when the nurse told me this was the plan, I simply said, NO. I conveyed the refusal 2 more times, and then learned today of other, much less traumatic means to address the problem. I share this because one lesson we've learned is that one has to be on the ball with the weekend crew, whether it's the on call doctor or the nursing crew. I suspect more medical errors occur during the weekends than the other 5 days of the week. My friend, Ted, tells me that Barlogie will be in Denver this week for a myeloma conference. So, unless absolutely necessary, no decisions will be made regarding any treatment until he returns.



In the meantime, I continue to deal with this torn up GI tract. I picked up this nasty bug, which is contageous. So, when I get to the clinic they immediately escort me to a private room at the end of the hall, so I don't infect anyone else. I'm given multiple IVs of antibiotics daily, along with potassium. We usually spend 4 to 6 hours at the clinic. Then, at home I have meds that must be taken every 3 hours. Not much sleep occurring here. I am assured that, even without this nasty bug, people usually get sick from this beam treatment. As long as its killing the cancer, I'll deal with it.

Have a good week everyone.
Dan

An Answer to GI Problems

Today was a better day, if only because it provided an answer for the gut wrenching GI problems I've had for the past week. Probably due to the heavy antibiotics they've been given me, one of my standard stomach bacterias has taken over my gut and colon. So, of course, I ask when we'll be discontinuing the antibiotics---NOT. I continue with infusions ever 8 hours and now have some medication specifically targeting the out of control bacteria. No instant remedy here.

Our nights are broken up by the need to continually hook up infusers (small bottles of medication that are attached to my port) every 2 to 4 hours. Tonight we are supposed to go through 3 infusers of potassium and 3 infusers of antibiotics--all at different times. The days at the clinic seem to consume about 5 hours, as they draw labs and then, based on those results, invariably have to order blood or platelets, or something else to drip into my veins. Whenever I get blood they give me Benadryl because I had a reaction to some blood a month ago. That just puts me to sleep for the afternoon. I'm mostly watching my white cell count, which is the best indicator of when the transplant is engrafting. It has been at 0.01 for days and moved to 0.02 today. I'm not sure that is truely an increase in white cells or just the shadow of that solitary white cell. But we're hoping for another rise tomorrow.

Since I'm fighting this bacterial infection, have no immune system, and have no energy, I am essentially housebound. Susan is going stir crazy with this confinement and tries to exercise every day and get out to do something (is she really shopping at Walmart?). She takes such good care of me, madly cleans up to assure no bacteria are hanging around the apartment, puts up with my hours of silence as I doze, and worries. We are both anxious to return home. We continue to be inundated with good wishes, prayers, meditations, cards, letters, emails, gifts, and just plain good energy from all of you. We love you for your generosity and compassion.
Dan

On Our Way

We are now one week from transplant, two weeks from the first high dose chemo. I wish I could say the ride has been uneventful, but not so. I'm told that the chemo is out of the system in 12 hours or less, but its effects continue for weeks. Like spraying weeds--the weeds don't die instantly, but wilt away over a few days. In this case the myeloma cells have been hit hard with the killer chemo and will take a few weeks, at the very least, to die off. So as the cells die I continue to be exhausted, my GI tract is a mess, and my appetite is gone. I've dropped 25 pounds since coming to Arkansas---an amazing feat in the land of the deep fat fryer!!

The last couple of days we've been dealing with an unidentified inflammation that's shown up in my blood work. Other than one night of fever, no other real symptoms, but that hasn't stopped them from going into high gear--because my immune system is wiped out. So we spend many hours at the clinic getting infusions of more antibiotics than I can remember, fluids, potassium, magnesium, platelets and blood. Can't take any chances given my lack of an immune system. All that being said, I am encouraged by how I feel. Being 2 weeks from the start of chemo and coming into day 7 of my transplant feel good. Despite the ups and downs, so far, so good.

And the Governor's letters continue to come in: the current list includes North Dakota, Wyoming, Nebraska, Oregon, Rhode Island, Tennessee, Kentucky, Montana, Virginia, New Hampshire, and the Chief Justice of the Indiana Supreme Court. Most of the notes are handwritten and express encouragement in my battle with myeloma. John Sadwith claims this idea was a 4 a.m. inspiration of his. I will say that it is fun to get the mail every day and see which governor has written to me today. Thanks John.

But our greatest joy is not the notes from the Governors, but rather the constant support we feel from all of you. Not a day goes by that we don't receive cards, gift baskets, emails, or some other reminder that you are here with us. We continue to be so grateful.
Love
Dan

Transplanted

The transplant went through on Thursday as planned. It was fairly uneventful--akin to getting a blood transfusion. They gave me 4.9 million stem cells. So now we wait for my white blood cells to go to 0--and they're almost there already; then wait for the transplanted stem cells to start producing new cells. The effects of the chemo continue to show themselves and probably will for another few days or week. Fatigue and exhaustion are the order of the day as this process takes it toll. I continue to be amazed that this is handled on an outpatient basis, but it certainly is better than being confined to the hospital. So every day we pull ourselves together and march off to the clinic to have labs drawn, blood checked, get some fluids and return to the apartment. Despite it all, we're glad to be at this point and looking forward to continued recovery.

And on a completely different note: John Sadwith has been up to his devious tricks once again. A few days ago I received two handwritten notes from the Governors of North Dakota and Wyoming, wishing me well in my recovery. It took awhile for me to believe they were real. Then yesterday I received two more letters--from the Governors of Tennessee and Kentucky! It seems John has used his influence with the many executive directors of the state trial lawyers associations to persuade his fellow directors to obtain letters to me from their governors. Talk about influence. Anyway, I apparently now have some political machinery pulling for me as well. John, you are one special guy.
Happy Easter to all.
Love,
Dan

A Day Off

This is my day of recovery after 5 days of high dose chemo. This morning they removed the bag of chemo and saline I've been toting around for the last 5 days. Also, no more infusions or oral chemo (including steroids). Tomorrow I have the transplant. They will give me back my stem cells. The procedure is very much like a blood transfusion. It will take about 30 minutes for the transplant, which is then monitored for a few hours. Then assuming everything goes well, I walk out of the clinic. The next week or two we then go in to the clinic every day for lab work and to watch as my white cells and platelets drop from the chemo, then recover from the stem cells I received. I guess you can say we're on our way. Finally. Without the steroids I'm expecting to crash in the next few days, as that certainly has been the pattern over the past several years. I think Susan will be spending more time at the library across the street (hiding out). Thanks again for all your love and support.
Dan

Beginnings

Yesterday we ecountered some scheduling problems, so the "super beam" chemo didn't start until today. We arrived at the outpatient transplant center at 8 a.m. and we were taken to a quiet room, with one other patient. Each of the patients has a recliner to relax in, there are plenty of IV poles, blood pressure gauges and all the typical hospital room paraphenalia. We started with 5 pills of anti nausea medication, then started one of the 4 chemos I would receive IV. The first drug I received came in a big glass container, circa 1950. Susan asked why it came in a glass container when everything else was in hard plastic. The answer: "you don't really want to know, but here's why---it would eat away the plastic." My response: "well then let's put it in my veins!"

I also received a shot of velcade, am carrying a bag of IV fluids along with a chemo drug, and have a couple of drugs I take orally at home (like the steroids, thalidomide). The regime runs 5 days so I will have this bag for 5 days. Other than getting drowsy from the antinausea, and dizzy (loopy) (drunk feeling) from the first chemo drug I managed pretty well. We'll see what the rest of the day brings. From past experience I think the tougher stuff comes around the 2nd and 3rd weeks, but we'll just take one day at a time. Susan and Julia kept me company (when I wasn't dozing) and continue to take good care of me. Catherine arrives tonight so I'll get the support of the entire family through this weekend.
We continue to have faith and to be optimistic and can't wait to see everyone back in Denver.
Love to all,
Dan

And the Plan Is......

We will be proceeding with the "super beam" high dose chemo next week followed by a stem cell transplant. Beam is just an acronym for 4 of the 9 drugs I'll be getting. We met with Barlogie yesterday and unfortunately, the bone marrow continues to be "packed" with myeloma cells. Although the IGGs have come down to around 3200 that apparently is not significant in light of the bone marrow being so full of myeloma. I've been given another week off to continue to recover and to regain some strength. I start physical therapy tomorrow and otherwise have daily labs until the chemo starts next Wednesday or Thursday. The chemo will be administered over 5 days, after which I'll be given my stem cells back and then we wait for the stem cells to produce new cells to replace the ones destroyed by the chemo. Everything will be done on an outpatient basis, although I'll spend about 5 hours a day at the hospital getting the chemo and being observed for any reactions. Catherine and Julia will be here next weekend which will be a big lift for me as well as Susan. I do wish it felt like we had made some progress over the past 2 months. The most I can say is we've held it at bay, but now it's time to start slicing it up. Not much going on for the next week, so I likely won't be posting much until the chemo begins. Here's hoping you have great spring weather for the next week ---yes, even you North Dakotans who are apparently homebound due to a blizzard. Why did I ever leave that state? Oh, yeh, the weather did play a role in that decision.
Love,
Dan

Four Years

Yes, four years ago today I received the diagnosis of multiple myeloma. Faint memories are all that remain of the life before cancer treatment. I have replayed the words my doctor told me in March 2005, "it's incurable, but treatable," a thousand times in my mind and all I can do is smile with disdain. "Treatable?" Infections and broken bones are treatable. The past four years of "treatment" gives new meaning to the word. But here I am, the journey having now placed me in Little Rock, Arkansas. If nothing else we are learning to live with the unexpected. It seems we plan our lives so carefully, work so hard to get somewhere, whether financially, professionally, socially, but our efforts at control are illusory at best. So we learn to accept what life brings us and to seek the joy of each moment, rather than dwell in the fear of what the future might bring. Oh, we have our moments when we look upon others whose lives seem to go along without a hitch; whose plans in fact come to fruition; whose lives seem to work. But amazingly, there is no resentment, no self pity. When dealt this hand, at least for us, it came with acceptance. And so we move forward.







As much as we have learned about ourselves over these past four years, we have learned more about the compassion within so many of you. We have been overwhelmed by the outpouring of love and support for our family from so many people, all over the world. I've never seen myself as someone who was there for people during their times of struggle, because I was mostly too wrapped up in pursuing my goals. Yet, without regard for whether I was there for others or not, it seems the world has reached out and taken us under its wing to nuture us through this struggle. You have made us much better people through your compassion and support. You have taught us what a simple phone call, email, or card can do. You have taught us that we can make a difference in the quality of other's lives, and it takes very little effort, only thoughtfulness. So, those are my thoughts on this 4th anniversary. We are so grateful for everyone who has stood by us, carried us, and cared for us. Our little world is a better place because of you. Thank you.



Love,



Dan

Once More Just For Grins

Met with Barlogie this morning. Within an hour I was having another bone marrow biopsy. I'm not sure I have any hip bone left; but I'm so used to the procedure that I took it without a hitch. The med techs only said, "what are you doing back here? Why is he doing this?" With me, it seems its an integral part of restaging my disease. Either that, or they're coming out with a new jigsaw puzzle---reconstructing Dan's hips.

Not a lot of info to work off during the exam with Barlogie, as I haven't had any testing in a few weeks, so not much new there. I am recovering well from the hospitalization; the blood counts are gradually coming up and the infection index going down. Based on some IGG numbers (3200) and M protein number (2.4) I think I've had a moderate response to this latest chemo--it just took awhile to show up. Anything that will reduce the tumor load for the transplant is good. Barlogie wants me to have some time to recover from the hospitalization and the chemo, which I'm interpreting as perhaps another week or so without any treatment. We see him again next Tuesday.

After I recover I'm pretty sure we will be going into transplant with the Beam treatment--9 high dose chemo drugs administered over 5 days. He says it is the best treatment they have for resistant disease and has optimism about its effectiveness with me. No second transplant. If it doesn't bring me into complete remission, then he would hope it would lower the cancer levels enough that we might squelch them with further pharmaceutical treatment.

The days continue to feel very long (8 hours at the clinic today) and the boredom with a life centered around treatment keeps me thinking of how much I love Colorado and the incredible number of friends we have waiting for us to return to our life there. We love you all and can't wait to see you.
Dan

Released

I was finally discharged from the hospital last night; after a week of having my sleep interrupted every 2 hours, and feeling like a caged tiger. For the first 4 days I was in "isolation", which I was told meant I couldn't leave my room. Then the ban was lifted and I was able to walk the halls. Discharging diagnosis: influenza and viral pneumonia. We're now trying to get tests scheduled but so far, no cooperation from the insurance company. Had 2 tests cancelled today due to nonapproval. In the meantime, we will continue to go in daily for lab work, a growth shot, and infusion of antibiotics. The blood counts are gradually coming up and the infection index going down. We'll see Barlogie after we get testing done I suspect. I need as much time as I can get to recover from this episode. In addition to just feeling weak, I dropped 12 pounds over the 10 days. Not a diet I would recommend. Susan has been such a champion through this. How utterly boring for her to choose between sitting in a hospital room or coming back to an emptly apartment. When the hospital food turned my stomach she ran out to find something more palatable. She would come into the room every day and "straighten up" as they weren't very good about that. She ripped a few doctors and nurses about the care I was receiving and has shown despite 30 years in Denver, New York continues to run in her veins. What would I do without my Suz?

We've received some beautiful and thoughtful notes from a number of people, as well as some gorgeous flower arrangements that bring life and light to the apartment. We are so appreciative of all your support and please know we feel as though you continue to carry us.
Love
Dan

And So It Goes

The weeks continue to present new and unexpected challenges. I survived the two bone marrow biopsies and had my chemo bag removed a week ago Friday, then promptly spiked a high fever and found myself on a different course this past week than aniticipated. We were dealing with daily lengthy visits to the clinic from Saturday through Monday, trying to keep my fevers of 103 to 104 in check. We saw Barlogie on Tuesday and put me in the hospital, and I'm still there. Seems despite a flu shot and tamiflu, I got the flu. Right at the time my white count was as low as it could go, so absolutely no immune system to fight. The biggest concern being not just in shutting down this viral influenza, but also making sure I don't pick up something else while I'm so immune suppressed. Fevers are lower but still pop up around 102 at night. I've been pumped full of more antibiotics, etc than I could recount. Hoping to get out of here by tomorrow, but it could be a couple of more days. Then some recovery time. While the meeting with Barlogie was supposed to discuss the plan going forward, we spent little time on that given my fevers. We'll keep you informed. Thanks for all your good wishes.
Much love to all,
Dan

Wrestling With the Beast

I'm old enough to know, if it sounds too good to be true, it probably isn't true. I told Susan a few days ago that I was prepared to hear that the latest bone marrow where the myeloma cells dropped from 90% to 5% was an abnormality. The meeting with Dr. Barlogie today confirmed those suspicions. The "numbers" from the last bone marrow (last Friday) don't show any significant improvement from the bone marrow of mid January, ie. 90% myeloma cells. Although not that bad, the numbers are all over the map from the 3 bone marrows since then, leaving him to explain that we're not getting an accurate sampling from the aspirations probably due to the adherent quality of these myeloma cells. As he said, we haven't made much progress and this will call for more "drastic" measures. I think I've been riding this roller coaster so long I can see the ups and downs coming. But before we go to drastic measures, we start with a few days with an increase in the thalidomide, followed by a double bone marrow biopsy on Friday--one on the right and one on the left. (I'll no doubt be waddling like a duck after that procedure). I don't think any of us are expecting some great change in test results.

The more drastic measures probably involve that "Beam bomb", which he so readily dismissed at our last meeting. This is a one time transplant with 9 high dose chemo drugs administered over 5 days. Then I receive my stem cells back and recover from the ordeal. This would be done on an outpatient basis and as he said, "you can handle it." I'm not sure what other choice I have, but my response was simply, "I'll do what I have to do, you do your part." It's that ornerary trial lawyer in me that will carry me through--either that or those strong North Dakota roots. Always the optimist I told Susan on the way home, that at least its only one transplant. We see Barlogie in a week and he will have a plan for us then.

Yeh, this is tough stuff. More mentally than physically. We are forced to draw down into resources we never knew we had, but we continue to discover that our depths have not yet been reached. Susan and I looked at each other as we left the doctor's office and she said, "we'll get through this, we've done it before." Yes, I know that to be true. My stalwart supporter is always at my side.

Never underestimate what you do for us with your unwavering love and support. It's hard being away from home, dealing with this nastiness, and contact with all of you keeps us going. We'll let you know the plan in a week.
Love,
Dan

Blessings

Deliveries this week:
--A beautiful bouquet of flowers "from your Denver friends." (Colorado Trial Lawyers)
--Chocolates from our friends in the Netherlands.
--A small pocketbook written and published by a close friend to provide support to all people dealing with a cancer diagnosis, dedicated to Dan. See www.AffirmativeLife.com.
--A box full of goodies, including a banner entitled, "Get Well Dan" and signed by all my friends at the Leukemia and Lymphoma Society.
--Cards and emails from many friends wishing us well.

You continue to lift our spirits. With deep gratitude,
Love,
Dan

Seinfeld Revisited

Have any of you seen the Seinfeld episode where he has all the hassles with his dry cleaners, including seeing someone wearing his shirt that the cleaners lost? Well, we've stepped into television sitcom land here in Little Rock. Two weeks ago we brought 7 shirts to the concierge in our building for laundering, having been told the laundry picked up and delivered to our building. After one week and no laundry we started calling. Yes, the laundry would be delivered, Wednesday, then Thursday, then Friday. No laundry. Finally I go to the laundry today and demand my laundry. They hand over 5 shirts. Where are my other two shirts? Gee, We don't know. They two women who work there go pawing through the hangers looking for my green shirt and brown plaid shirt. No shirts. They must be back at your building. Call the concierge. No shirts. Then we must have included them in someone else's laundry in your building. Call the concierge. She'll check and get back to me. Return home. Inspect my shirts. They're burnt. Yes, burnt. You can see the brown singe marks on the collars and along the buttons in front. Feels like I slept too close to the campfire last night. I think the only thing that is going to make me feel better is some possum porridge or squirrel stew. Having a good time.
Dan

12 Hours of Not Waiting

Some days things actually get "done" here. Today:

6:45 a.m. arrive for 7:00 a.m. appointment for yet another bone marrow biopsy--#6 since November. I realized last night that my platelets are way low 30,000 (normal being 150,000 or above), and I likely won't be elgible for the biopsy, since platelets are the clotting factor for the blood. So certain am I that I don't take the narcotic this morning that I was sent home with me (fentynal) to be taken 15 to 30 minutes before the biopsy. Why does the patient make this realization? Dont ask me. All it teaches is that you have to be your own advocate. We're told when we get to the clinic that there will be no biopsy because the labs they drew on me yesterday had never been processed but were cancelled---no one knows by whom. They need to know my most recent platelet count before proceeding with the biopsy.

7:00 a.m. back to the infusion room where I cajole one of my favorite nurses to draw my labs, then wait an hour for results--yes, you need platelets as they are now 23,000. Stick around. Platelets are ordered and infused.

9:30 a.m. back to bone marrow for biopsy.

11:00 a.m. back to clinic to receive 2 units of blood, based on this morning's blood draw, some potassium, shot of velcade (chemo drug) and a new chemo bag to carry around for next 14 days.

3:30 p.m. leave infusion room and go home. Decide to take a walk with Susan. During walk she notices rash developing on my face and neck. Call clinic and told to get back there.

5:15 p.m. return to infusion room where six nurses stand around and stare at my face, humming and hawing. Shut down chemo, wait. Reaction begins to subside. Call the doctor and he says he thinks its a reaction to one of the blood products I received. Shoot me up with benadryl and cortizone.

7 p.m. leave infusion room. Rash is gone. Long day.

Highlight of the day was the political argument between Susan (a staunch Democrat) and a patient who had similarly strong views about how every ill this country faces is due to Clinton and Obama. Since he was there because his blood pressure was unduly low I thought Susan was performing a kind of treatment for him, causing his blood pressure to rise. After a long day for everyone, this animated political conversation seemed to lift the spirits of both patients and nurses---all of whom had the wisdom to stay out of the conversation, including me. As we left Susan and the patient both told each other they took none of it personally and rather enjoyed the debate.

Readership on this blog has now ballooned to over 60 visitors a day. Life in Little Rock apparently has some interest for a number of people. How sad. I can see it all now, the new TV reality show: Real Patients of Little Rock (I'm not sure Real Housewives of Little Rock would be a big draw--except for people interested in learning the latest deep frying techniques. Put a southern accent to: "Have you every tasted crispy fried squirrel tail? Why it's delicious.")

We love you all and appreciate your support more than you can imagine.
Dan

Hard to Believe

Nervous. Meeting with Barlogie today. Last week we were told my response to the chemo, based on IGG levels, was not great. Already met one of the transplant nurses who told me that I would definitely get sick from the side effects of the high dose chemo used in transplant. Barlogie walks in, warmly hugging Susan and shaking my hand. Sits at the computer and begins a review of the data. Oh, so much data. I glance over. He is reviewing a bar chart of the IGGs. Not a great drop. I had so much trouble accepting what we were told in January before I started the first round of chemo that I never blogged this info: My cancer levels, i.e., the degree of cancerous plasma cells in my bone marrow had jumped to 90%, from 10% to 15% in November. I was so frustrated that delays in scheduling my trips here and treatment left me untreated for almost 2 1/2 months and the myeloma seemed to be out of control. Barlogie speaks. "This is hard to believe." I look at Susan, she at me. Oh shit, now what. "Hmmmm," he says. Then, "your bone marrow shows your cancerous plasma cells have dropped to 5 %." "This is hard to believe."

He starts flipping through the paper file in front of him, which is now about 6 inches thick. I'm sure he will find a way to take back my rising spirits. "No," he says. "Dan, look at this." He shows me a graph of spicules from the bone marrow biopsy in January and compares it to the biopsy of last week. The difference is obvious. "This is excellent." "This is proof." Then, he sits back, puts his finger to his lips, "what to do, what to do", flipping through more of my data. He lurches forward, pulls out an order sheet and begins to write. "I think we'll do another round of chemo, this time for 14 days, and some new drugs, along with some of the same ones." I point at him and say, "I'm no doctor, but I agree. My intuition told me this is what would be best for me." This was one of the many questions I had written down to ask me---why not another round of chemo. He reviews the drugs with me. I ask, "and then are we looking at a transplant." He responds, "I'm not sure. We'll have to see how you respond to this next round." We have moved from the presumption of a tandem transplant to perhaps no transplant!

Relief does not describe the massive weight that has lifted from Susan's and my shoulders. We know this is not the end of this disease, this process, or my treatment. But we so desperately want some up days to keep us going. Last week was such a low point, with the doctor (not Barlogie), telling us I was now in the high risk category (Barlogie says definitely not) and that I would most probably be going right into transplant and would be given one of the harsher high dose chemo regimes. One that I had unerstood was used mostly with high risk people. I asked Barlogie about that regime. He said definitely not for me at this time.

Another day in the life of a person dealing with this nastiness. Today, not so bad. I never thought I would have that response to a prescription of 14 days of constant (yes round the clock) chemo, but that is how I feel right now.

Last weekend we drove to Tyler, Texas to visit my brother Mike and his wife Penny. We had the greatest time. First just getting out of the treatment mindset was so refreshing (30 days of mostly 2 visits a day to the clinic/hospital). And being able to do it in the comfort of their beautiful home, with family. They took such good care of us with meals, manicures (no, not for me), and idle conversation. We came back refreshed. Thank you Mike and Penny.

Catherine will be joining us this weekend. We are so excited. More so knowing that I won't be in the transplant unit of the hospital. We might even get to go out for dinner (I continue to be the optimist).

And thank you to everyone for your continuing support. As we get battered around you provide us with strength through your love and support. We continue to be so grateful.

Much love,
Dan
Addendum:
An insight into my own disbelief at the tremendous response to the chemo: I awoke this morning and thought maybe they had mistakeningly put someone else's bone marrow report in my file. I checked my copy. No it's mine. It is true. Also, stem cell collection is very good in Barlogie's view. With the 16 million I have (10 mil from Denver) we've got enough for 4, maybe 5 transplants. Let's keep them on ice, I say. Despite the runup in the numbers while waiting for treatment, based on other data, Barlogie does not believe my disease is particularly aggressive or angry. And finally, for you true biologists, (yes that would be you Molly) technically speaking the 90% and 5% numbers referenced above are not "cancerous". The tests measure bone marrow cellularity and then the percent of plasma cells within both the bone marrow and the aspirate drawn from the bone marrow. So my celluarity in January was 97% and is now 50%. 50% is about normal. The plasma cells were 90% and are now 5%. That is where the cancer resides--in the plasma cells--we all have plasma cells, mine just produce too much of the IGG antibody. Hence they look at IGG levels as an indicator of the cancer levels. As I've said in earlier posts, the biology of this disease escapes me. I spent way too much time staring at the high school girls in my biology class and not reading the books to be able to understand all this. But, it's all still good.

Four Words You Don't Want to Hear

Lying on the table in the operating room, awaiting the removal of one catheter for substitution of a smaller one. I am fully conscious. My head is turned to one side, sterile gauze across my face. I realize I have a resident or trainee working on me, as I hear another voice instructing him on the procedure. Not much I can do now. The resident is told to remove the catheter. I feel a pull. Then, I hear the resident say: "uh-oh, that's not good." Warm liquid oozing down my neck and onto my shoulders. Two hands quickly start to press hard on my jugular vein. No one is speaking. Nurses are activated, moving about in the operating room. Handing the surgeon gauze or something else. I can only hear, not see. Hands continue to press. 10 minutes? 15 minutes? I don't know. Finally I speak, "How are you going to stop the bleeding, doctor?" The other voice is now at my side, and I realize it is his hands that are on my vein, pushing, pushing. "We'll continue to use pressure. We've removed a larger catheter, your platelets are low, you're feeling some blood on you." I wait. Pressure continues. A few minutes later he repeats himself. I start to shake. I'm either cold, nervous, or both. "Get him a blanket." I feel a nurse's hand grip mine, stroking my arm, calming me. The pressure continues. Finally, he releases. A pause. Some wiping on my skin. The new catheter is now placed by the steadier hand of the more experienced surgeon. The clean up begins, warm cloths on my skin. Sutures. I feel myself relax. A pat on the shoulder from the doctor. "You're a good patient." I respond: "It's better to be a good doctor."

I get off the table. Nurses won't make eye contact with me, but they are looking at each other with expressions of frustration, fear, disapproval--I'm not sure. No one is speaking, unlike the other times I have been through this. No question this was not standard procedure. I want to get out of here. As I am escorted out of the OR, I pass the doctor who I hear instructing the resident on how to properly do the procedure he just botched. In another time, perhaps 5 years ago before all this nastiness began I would have confronted them with a "what happened in there." I don't have the energy. I stop in the restroom. I see blood oozing from beneath the gauze. A return to the Pre op. A change of dressing--15 minutes after the procedure. I am assured the bleeding has stopped.

Yes, that was my yesterday. Today, 7 a.m. I check in for a bone marrow biopsy. I ask, "who will be doing the procedure on me today, because I will not have an inexperienced hand on me today." I am assured my tech is very experienced. He is. The bone marrow biopsy goes as smoothly as the procedure can.

This is my week off. Nothing more to say. The journey continues.
Dan

Transplant on the Horizon

I finished the stem cell collection today, then met with the doctor (not Barlogie) mainly to get orders for the next round of testing. We have some confusion regarding stem cell collection, but it appears we're around 5.2 million cells collected. They've requested the 10 million I have in Denver so we'll be at 15 million. And more collection could possibly occur in the future, although after each transplant it becomes more difficult.

Tomorrow and Thursday I go through another round of testing---PET scan, MRI, bone marrow biopsy and removal of one port and installation of another (they use a different port for stem cell collection). Then a week's break to recover and we meet with Barlogie in a week to discuss the next phase. I need the break as the fatigue seems to build. I'm most relieved that I won't have any more shots for awhile. My poor belly is a bit bruised, but I am thankful I brought some extra poundage. That spare tire provided a cushion. I always knew there was a reason I didn't have six pack abs.

The chemo regime brought the IGGs down to around 4500 from 6500. Not a great response, but we are reminded that IGGs are not the definitive measure, thus the need for more testing. We think we'll probably move right into the first transplant after the week's break; which was the plan from the beginning. It wouldn't surprise me if the planning, paperwork, etc. takes another week or more before the transplant. But tentatively I'm looking at late February.

We are saddend by Julia's departure tomorrow as she has been great assistance and company during these long days--even with her broken hand. She has become something of a celebrity in the infusion room with her broken hand, but she takes the ribbing in stride. We are buoyed, however, that Catherine will be coming for the weekend in about 10 days. It is hard to express the depth of gratitude I have for these three beautiful women in my life who continue to spend so much time in support of me during these past years. Their hearts are huge. I have often said one of the most difficult aspects of this disease and treatment is the burden it places on those most close to me. I would wish for all of them that their lives could be more carefree. But I am very grateful, for they keep me going.

We moved to a different apartment, after too many hassles and frustrations with the inadequate furnishings of the first apartment. It is the same building, but here is the new address: 300 E. Third St., #1201, Little Rock, AR 72201. Thank you everyone for the cards, emails, gifts, good wishes, and prayers. You continue to lift our spirits.

Much love to all,
Dan

Reluctant stem cells

First things first, I've lost all my hair.

We are now deep into stem cell collection. Having survived the chemo regime I was optimistic that I would breeze through stem cell collection and be offered a week or two break before the next phase starts. Such is not the case. Stem cell collection has proved more difficult than expected--due to the fact that I've had a previous transplant. Prior to my first transplant they harvested 20 million cells in one day, using 10 million for the transplant (a decision that has not been well received here, as they say you only need a minimum of 2 to 3 million for a transplant--but 4 to 5 million is preferred. So why was I given 10 million?) Anyway, my first 2 days of collection only yielded 1.4 million cells. So I became the lucky recipient of a new drug--mozibil--which was only approved by the FDA last month, after clinical trials here in Arkansas. It helps me to produce stem cells. That shot, too, goes in the gut and brings a few of the notorious chemo side effects (even though it is not chemotherapy). The drug costs......$20,000 a shot! I'm told insurance pays because the drug usually reduces the number of days on apheresis (stem cell collection). Anyway, they collected 1.8 million yesterday, bringing my total to 3.2 million. I'm limited to 4 shots, so I should be done by Tuesday and hopefully will be above 6 million in stem cells, which will probably be enough for the double transplant.

Life in Little Rock continues to be slow. I'm pretty exhausted so the pace is of no consequence to me. I think it must drive Susan crazy. We arrive at the clinic by 7 a.m., finish apheresis around noon, go home for a couple of hours and return to the infusion room, usually to get a transfusion of red cells or platelets, and 3 shots to the stomach. Susan and Julia alternate in taking me and sitting there as they do their work on me.

Oh, and then there is Julia's broken hand. While Suz and I were at the clinic this week and Julia was at the apartment she managed to break her hand. Yes, her hand. She claims she accidentally it on a chair. Whatever. She is now in a cast. Her trip back to Denver will be a bit of a challenge. Oh, and then there is the independent study she will be doing in Belize this month. She is upset at the inconvenience she will have traveling to Belize and trying to snorkel with a cast on. But, we can only laugh. And that seems to get us through.

The idea of spending months here in Little Rock is more than we can handle. So we take one day at a time. There are moments, there are days, and even weeks, when life is everything you could ever hope for. We dwell in those and allow the more difficult times to slip through and not grab us. The message we continually receive here is one of hope, from the patients and the nursing staff. They constantly tell us, "we don't give up." It is very humbling to have so many people committed to caring for you, for other patients and for the eradication of this disease. These people have huge hearts and they envelope us every day with care. We continue to be grateful for all the goodness we receive and we send our love to all of you.
Dan

Coming Out of the Fog

The last couple of days I've seen an uptick in energy, slept less, and am hoping we are nearing stem cell collection. Blood chemistries were a bit whacked out this week, requiring a couple of transfusions and multiple infusions of potassium and magnesium. I'm told the bone marrow uses those elements to produce cells, so that is probably why mine are depleted. My white cell count seems to be rising, albeit slowly, but I'm hopeful that by next Tuesday or so we'll see a jump and they will want to collect cells, thereby ending the shots in the stomach, which aren't so painful, but I wince every time I'm subjected to it. This morning's nurse said she thought we would definitely be collecting sometime this week. We see the doctor on Monday and I should get an update on the status of the cancer levels and maybe an indication whether I'm likely to have to go through another chemo regime before transplant.

Hair loss is setting in again. Yes, I know, I've had this condition since I was about 26 years old, but clumps of hair are now dropping off and within a couple of weeks the bald dome will reemerge. I'm told that look is now "hot". Can't wait to be "hot"!

Little Rock continues to be Little Rock. We miss Denver and our friends.
Love,
Dan

Acclimating to Arkansas

We're coming up on two weeks in Little Rock. Never in my wildest dreams........I resist any temptation to question, but rather just try to stay open to the fact that I am here now. But life does manage to throw some unexpected curves to us on occasion. My brother Mike left this morning, having driven up from Tyler, TX for the weekend to give Julia and Susan a break from the long days at the clinic/hospital. Nice of him to spend his weekend that way. The effects of the chemo continue to slow me down. Even though I've officially been off the chemo bag since Wednesday, apparently the effects take some 4 to 6 days to really show themselves. Mostly I get hit with these waves of fatigue and exhaustion, but other than that, managing it OK. I started growth shots on Thursday that will continue until I've produced enough new stem cells to harvest them for the upcoming transplant. That could happen as early as next weekend. The days at the clinic are mind numbing. So much waiting. We had a 10:30 a.m. appt. with the Dr. on Friday morning. Saw him at 3:30 p.m., having spent the 5 hours in the waiting room and the examination room--waiting. The problem is one created by just too many patients and not enough nursing staff or doctors. But to have all these patients sick with cancer, sitting and waiting for long hours is hard to take. My brother Mike questioned a few people this weekend about this problem, but, although everyone is aware, no solutions seem to be presenting themselves. It's worst when we have to see the doctor---so maybe we just avoid that!!! Not a good solution in my mind. We didn't even get to see Dr. Barlogie on Friday, after 5 hours of waiting, but once Susan and my anger passed, we calmed down and felt pretty good about the doctor we saw, the answers we received to our questions, and the plan going forward. There continues to be no question in my mind that this is the finest myeloma treatment center in the country. The data that they produce each day on each patient is so impressive. This doctor pulled up graphs in the exam room showing the reduction in my IGGs (yes, they're going down), and other pertinent chemistry---all from lab work done that morning. But the waiting does present its challenges for the patient. Days are long, activity is slow, excitement is nil. This is Arkansas!
We love you all,
Dan

First Round Completed

They disconnected me from my chemo bag today, after 4 days of constant pumping. The worst part wasn't the chemo reaction as much as the stomach shots to prevent blood clots. Some techs were better than others on that technique. I did need a transfusion (2 pints and I'm not talking Guiness) on Monday as my red blood count was plummeting--not a surprise, though. Now we wait for the bone marrow to bottom out, i.e., white cells, and platelets to drop. Then, even starting tomorrow perhaps, I will start receiving growth shots to stimulate stem cell growth for eventual collection of millions of my stem cells. That could occur maybe in 10 days to 2 weeks. Depending on the state of my cancer I'll either go right into the first transplant or get a break of anywhere from a week to a couple of weeks to recover.

The process here is maddening slow but they have such an expert team assembled that we don't resent it. They are inundated with patients and everyone is so committed to the task of caring for them, that we all put up with the inconvenience of waiting. Is that why we're called patients? Dr. Barlogie drives a tough ship. As one of the nurses said, "he works 18 hours a day and expects everyone else to as well, and we do." Can't complain about that.

The burden I fear is greater on Susan and Julia as they wait and wait and wait at the clinic/hospital. How utterly boring. But they are so patient and understanding and every day I become more grateful for their support, as well as Catherine's regular calls to check on us. My brother Mike is driving up from Tyler, TX this Friday to give some relief to my drivers, as once I start the growth shots it will be 2 visits a day to the infusion room.

That's the news from Little Rock. Despite all the waiting things feel like they are moving rapidly. With much gratitude for all your good wishes, thoughts and prayers.
Love,
Dan

Hooked Up, Pumped Up, and Out of the Gate

We've spent more time waiting than getting treatment over the last few days, but they've now remedied that. I was hooked up to the 24 hour chemo bag today and will carry that around for 5 days, then we just watch and wait for the blood counts to drop, after which I'll get growth shots to stimulate stem cell production so they can harvest more stem cells for my transplant. We've spent about 7 hours each day at the clinic/hospital the last 2 days. Wears one out. This is a busy place. Saw Dr. Barlogie on Friday. Numbers are way up due to my not having any treatment over the last 2 months. It makes me nervous, but he said not to be concerned, we'll knock it down. So off we go. The protocol remains the same. We're settling into a nice condo we've rented with a nice view of the river and the city, including the Clinton library (I know this makes my conservative friends cringe). I've taught Julia Backgammon and she says she is now ready to take on any old men who might want to play--insinuating this is an old man's game. Well it wasn't when I learned it 30 years ago! Cate calls every night to check on us. She's so sweet and we all miss her, as she does us. I'll have to get my skype set up so we can do some face to face conversations. That's the state of affairs here in Little Rock. Thank you everyone for your cards, emails, calls, prayers and good wishes. We are very grateful for the support of all our family and friends.
Love,
Dan

Wednesday morning downtown Little Rock

Wandering about looking for a place to buy the New York Times and some sausage. Traffic feels like Denver on a Sunday morning. Slow. The local liquor store carries the Times, but only receives 2 copies at 8 a.m. Too late for that. I guess we'll have to line up outside the door in the morning, waiting with the others who await the opening in order to buy their MD 20/20 or other high class alcohol. Why sausage? Limited diet today--only protein until noon, then nothing but water for 6 hours in advance of the PET scan this evening. Bone marrow biopsy at 7:45 a.m. tomorrow, then meeting with Dr. Barlogie on Friday morning. If all is in order, I will then have my port installed in my artery to facilitate the drawing of blood or administration of IV drugs. Soon after I think they plan to harvest my stem cells, before they destroy the bone marrow with the chemo. I guess you could say we're off and running. Stay tuned.
Dan

Winter in Little Rock

Susan and Julia have arrived in Little Rock and are now in the apartment we have leased for our stay. I leave in the morning and start with more testing on Wednesday and Thursday. I see Dr. Barlogie on Friday morning and expect to get the green light to proceed with the treatment. I've tried not to think about it--just taking things one day at a time.

Thanks to many of my lawyer friends the cupboards in our new apartment were stocked with food when Susan and Julia arrived. I have learned that John Sadwith once again went out on a fund raising campaign and accumulated funds to help us with incidentals during our stay in Little Rock. I continue to be humbled by the generosity of so many people. Julia will be staying with us for a little more than 3 weeks, then returns to school. She was able to skip a block of classes since she will have accumulated enough credits to graduate in May. Yay!

Our address in Little Rock is: 300 E. Third, #1002, Little Rock, AR 72201. We will stay in touch via the blog, so check in often, post your comments (if you can remember how to do that), and keep saying those prayers---they've carried us a long way.

With much love and gratitude,
Dan

Transitions

We've decided to go to Arkansas so I can receive Dr. Barlogie's treatment protocol. We met with Dr. Rifkin on Monday and everything about that seemed to suggest that this is the way to go. We are waiting to receive my schedule from Arkansas and then we can finalize our plans. In the meantime, we've put our names in on a condo to rent. I'm thinking the start date is likely to be January 3rd. Julia will drive down with Susan and could stay for as long as a month, as she has some flexibility in her class schedule. We've already had many offers from friends to come down to Little Rock to help out for a long weekend and I'm thinking we're going to have to put together a schedule. On one level it seems to be quite a dramatic turn, and on another plane it all feels very natural.

I'll be much more diligent in my blogging and invite all of you to start posting comments so we can feel connected to all our friends.---just let us know what's going on in your lives. My recollection about my last transplant is that my blog is a large part of what kept me going----so let's do it again, and then again, just for grins!

I suspect there won't be a Christmas letter coming out this year, so you'll have to let this suffice. We wish you a very happy holiday season, and extend to you our deepest gratitude for everything you have done for us over these past few years. We are enriched and nourished by your support and friendship.
Love,
Dan

Little Rock Bound?

We had our meeting on Friday with Dr. Barlogie. We went through the results of the multiple tests done during out last visit, the week before Thanksgiivng. No additional problem areas identified in the PET scan other than some gallstones. The bone marrow does not show heavy myeloma involvement (whatever that means). and the gene array has put me in the "low risk" category for the disease. My cancer levels are around 12% (compared to 68% when first diagnosed). I find the the labeling of this nastiness as "low risk" an oxymoron, but it refers to Barlogie's studies of treating people and how successful his treatment regime has been. Low risk brings a higher chance of remission. His recent studies show, when he is the initial treater, he gets 90% of his low risk patients into remission. 85% of those are in remission 4 years later. Becuase I have been previously treated I don't enjoy those same stats, but they are still good. So, what's the issue, you ask?

His treatment regime is rigorous, to say the least (brutal might be a more apt description). He proposes starting with 8 chemo drugs for a 3 week cycle, followed by further collection of my own stem cells, an auto transplant (my own cells), then a second auto transplant about 6 to 8 weeks later. This should take 3 to 4 months. Then 3 years of a 3 drug chemo regime as maintenance. He will require me to be in Little Rock for the 3 to 4 months of treatment, although suggested I might be able to go home a couple of times for a week or two.

We will see Rifkin, on Monday, to review the situation, although I am strongly leaning towards pursuing treatment with Barlogie. Of course, my greatest concern is my ability to handle this heavy chemo regime, but Susan will be by my side, keeping me going. We started looking at apartments this afternoon and will process that info over the weekend. If we decide to make the move, I expect we'll be moving to Little Rock in early January for a minimum of a 3 to 4 month stay. Many things to process, digest, and plan for in a short amount time---over the holidays, no less.

I struggle with how we will manage these months without the help of our many friends who have carried us through so many rough roads so far. But then we do have this blog, which Ted started before my last transplant in 2005, and we're already receiving offers of friends to come visit us, to help by giving Susan a break, and by just being there to support us. So, the journey continues. We love you all and continue to be full of gratitude for our many friends.
Dan

Preparation

What does one do to prepare for an upcoming regime of chemo followed by a transplant? Why, go skiing, of course. Cate, Julia and I hit the slopes this weekend to test out the old boards. Julia has kept at it these past years, but Cate and I have been slackards (4 years for me, 7 for Cate). The day was reminiscent of many days of skiing 10 to 15 years ago when I had to help with the girls' boots, carry their skis, etc. etc. Except this time roles were reversed. The girls helped me with my boots as the cement in my back apparently has limited some of my flexibility. Imagine that! Julia and her friend Bob carried my skis and Julia was the great protector, lecturing me about going too fast, not skiing "in control", and on and on. It seems those words of advice I imparted those many years ago did find a place in their memories and they brought them out to lecture me, of all things. Even though it had been 7 years for Cate she hasn't lost a step. She was a beautiful skier in high school and she hasn't lost a bit of her smooth form. Julia has progressed nicely and has a similar smooth parallel style. And I still look like a bulldog, or bowling ball barrelling down the slope. Nothing has changed except I ski a bit slower these days. We had a great time and I am now ready for the trip to Little Rock to get the news on the latest tests and the proposal for moving forward. I suppose skiing could be the metaphor for this journey: sometimes the terrain is steep; it can be a little scary; you might even fall down and hurt yourself; but smoother runs are ahead so dig those edges in, hang on, and ride it through. I'm ready. I'll check in with you later.

Love,

Dan

No Easy Answers

First, a Happy Thanksgiving to all. This year our family is joined by my mother, her husband, Bob, my brother Tom and his daughter, Gina, for the celebration. We will also be joined by a few friends and there will be 14 at our table. Susan has pulled this dinner together in the wake of a difficult week last week. She continues to amaze me with her endless energy. We will gather round the table this year and once again give thanks for all of you, your love and support, and the blessings of another year past. Thank you.



And now for the news on the cancer front. I met with Rifkin yesterday to review the Arkansas approach and to wrest from him his views of Dr. Barlogie. We decided I might do better by myself rather than bringing the troops (Susan, Catherine and/or Julia). A good strategy, but given the tenor of the meeting I do wish Susan or the girls had been there, rather than having to rely upon my impressions. The meeting was casual, informative, and nonconfrontational. First, Barlogie has yet to make a recommendation, as he awaits info and data from the bone marrow biopsies. He sent a letter to Rifkin and as Rifkin said, this is the most noncommittal he has ever seen Barlogie. He suspects he is a bit perplexed as I am doing quite well despite 3 1/2 years of treatment, but still have evidence of the disease. I confronted Rifkin as to why he obviously disagreed with Barlogie's very aggressive approach and in essence he thinks the overall chemo regime is very very hard on people, can lead to long term permanent impairments, and has not yet proven to extend life any more than a less aggressive approach. Admittedly he gets more people into remission, but Rifkin said the studies are too young to yet establish this approach extends survival. Rifkin does believe a heavier chemo regime is probably in order for me, primarily because of the resistance I now have to velcade, but would probably approach it less dogmatically, i.e., if I experience too many side effects he would likely moderate the doses rather than push me on through the cycle. He also thinks at least one more transplant is in order, and maybe a second with one of my brother's stem cells. But, he seems most interested in hearing what Barlogie's recommendation is and going from there. He wisely noted that if a cure had been established, they would all be using the same approach. But since there is no cure, there is no agreement on the most effective treatment. Rifkin is willing to work in any capacity I want, whether it be as primary doctor, consulting doctor, secondary to Barlogie or whatever. In fact he said if I decided I wanted to go to Arkansas and then came back, I would always be welcome back as his patient. So, the meeting took the edge off and we will know, probably no later than December 12th, what Barlogie recommends. I will then meet with Rifkin and decide how to proceed. For now I am on a drug holiday, and happy for that.

Best to all of you and Happy Thanksgiving.

Love,
Dan

Little Rock Notes

We arrived home last night (Saturday) after 5 pretty busy days of testing in the Myeloma Institute at University of Arkansas. We thought we would be finished at the conclusion of our meeting with Dr. Bart Barlogie on Thursday afternoon, but during the meeting he ordered 3 more tests (2 more bone marrow biopsies and a PET scan), all compliments of the the Institute, since their cost was not covered by insurance. I had a complete workup from xrays, MRIs, bone scans, blood work, biopsies, etc. etc. My myeloma is not running rampant, but it is also not inactive. Catherine and Julia had fixed us dinner (mainly Julia) and we had a nice family dinner and discussed the heavy topic of Dad's likely treatment options (see below). It felt so good to be home and to be able to start to process some very complicated information.

Barlogie will be meeting with his team of doctors this coming week and we expect he will have a recommendation at that time as to treatment based upon the test results. We are scheduled for a revisit on December 12, although they were clear that if he thinks I should come back sooner, they will let me know. Suffice to say he does not mess around with this disease. He has been studying, researching and treating exlcusively myeloma for the past 20 years and I am confident he is the best myeloma specialist in the country, if not the world. He also has a reputation for being very aggressive with his treatment. Some in the medical community are critical of this, (probably including Dr. Rifkin) although one can't argue with his success. He achieves remission in a large percentage of his patients with his aggressive treatment. I think that the patient's "quality of life" is compromised during the treatment phase (which likely will include some heavy chemo, followed by one if not two transplants, and then another course of chemo, followed by maintenance chemo), but if remission can be achieved it seems to me like it's worth the sacrifice. Whether I will continue to treat here in Denver, or have to move to Little Rock is unknown at this point. My decision is complicated by the fact that I have a two well respected doctors and their egos have some play in all of this. I, on the other hand, just want to do what is best for my life. They may well have differing opinions on that.

And to end on a lighter note:
Barlogie referred to me early on as "chubby"; to which I replied: "better than mildy obese."
Susan has to return to Little Rock because all of her new friends will want to see her. She makes friends quicker than anyone I know.
The people of Little Rock are the nicest people I have ever met. They go out of their way to help you, to greet you, to put a smile on your face. This trait, in combination with Susan's ability to make friends, bodes well for any future visits.
If you're looking for a job opportunity, open a car rental shop in Little Rock. There were no rental cars available until Wednesday. None in the entire city.

We continue to be grateful for all of your love and support. I will post another note once I know what Barlogie is recommending.
Love,
Dan

And We're Off to Arkansas

We finalized our arrangements today to go to Arkansas for a second opinion regarding the path forward. We see Rifkin late Monday and head straight for the airport to go to Little Rock. I check in at the Myeloma Institute at 7 a.m. Tuesday morning to begin a series of tests for 2 days, after which I will have a consult with Dr. Barlogie, one of the world's leading experts in treating myeloma. Of course, Susan will be there to keep me in a positive frame of mind. She's the best! I couldn't imagine being on this journey without her. This contact with the Myeloma Institute was facilitated by Dr. Yosef Refaeli from Denver's National Jewish Hospital. The whole "adventure" makes me quite nervous, probably because I am fearful of what I might be told about my disease or future treatment. Not that I am unaware of the seriousness of this nastiness, but after some time of managing to keep it under control, I have become accustomed to blocking out those negative thoughts. I will, nonetheless, have put together a long list of questions for both of my doctors. And in 10 days I will report the answers to you.
Much love to you all.
Dan

Arkansas Connections

As I considered the narrowing options for my next chemo regime, I decided that seeking a second opinion might not be a bad idea. Fortunately, last month I met a research biologist at National Jewish Hospital here in Denver. He graciously agreed to meet me for lunch a few weeks ago, and even more graciously offered to put me in contact with the chief doctor at the Myeloma Institute at the University of Arkansas, which is the world's largest myeloma treatment center. The Institute was founded and funded by Sam Walton, of WalMart fame. Mr. Walton, it seems, had myeloma also. Anyway, I am now in communication with Dr. Barlogie's chief nurse and hope to have either a telephone or in person consult with him about his recommendations for my future treatment. I will then discuss those with Rifkin and we'll make a decision about how to proceed. I am scheduled to see Rifkin on Monday and he will have his recommendation for me at that time. I had hoped to have completed the consult with Dr. Barlogie by then, but things are proceeding a little more slowly on that front.

I've been off chemo for 3 weeks now and it is great. Finally, after 14 months of the steroid roller coaster and the velcade fatigue, I feel like I'm clearing out. It's a short respite, but most welcome.

I'll post something as soon as something develops.
Love to all,
Dan

Reevaluating

The visit with Rifkin on Monday would not rate as one of the better ones. My numbers are now 2435, up about 450 points from last month, and up almost 1000 in last 3 months. Time to change treatment. We reviewed all of my prior treatments, the success or failure of them, and the options going forward. There are not many new therapies currently available. I still don't qualify for the HSP 90 clinical trial (due to prostate cancer), and that seems to be the only place it is currently available. He seems to be leaning towards going back to the Revlimid/dexamethasone, which is part of what I was on last Fall--along with velcade. That regime brought my numbers down from 5500 to 1400 in about 3 months. Only this time we wouldn't use the velcade. The other option was Thalidomide and dexamethasone, which was my initial chemo in April 2005, but was extremely hard on me, although quite effective. Rifkin is going to Boston in a few days and will present my case to the myeloma specialists there to get their input and any new therapies. Nice to have a doctor that is so connected. He's giving me a few weeks off before the next treatment starts in order to let me detox from the past 14 months of chemo. (2 weeks to detox from 14 months???--whatever).

We also talked about transplants, and although that is not part of the discussion for the next line of therapy, I am expecting that if the next line is effective in bringing my numbers down, he will want to do another transplant. He sounded like he would want to use Mike or Tom's stem cells this time around as opposed to my cells. Using a sibling's cells is called a mini allo transplant. It doesn't wipe you out as much during the transplant phase, as I don't think they obliterate your bone marrow with high does chemo, like when they use your own stem cells. The difficult part of a mini allo transplant is the graft host disease, which is when your body fights the new immune system (just like when a person's body tries to reject an organ transplant). You want to have some graft host disease, but not too much.

It's hard to hear this news as I sure don't feel as sick as this sounds, but it's kind of like having to defuse a time bomb. We'd better do something or else. It's taken me a few days to process this as I must admit, despite its ups and downs, I've gotten used to this weekly chemo regime. Of course, fear wants to creep in and shake me. Fear that the chemo won't work; fear of complications with the transplant, etc. But then I think, we've been through all that--including both chemo and transplant not working, and I'm still here. So, with most challenges like this, I guess we take it one day at a time. In that vein, Susan and I took Tuesday off, did some shopping, went out to lunch, and spent the day together. We had a great day! That is, after all, what it's all about. I suggest each of you do the same with someone you love. You won't regret it.

Rifkin will give me the new plan on November 17th. I'll check in with you then. Until then, be sure to vote.
Much love to you all,
Dan

Light the Night Interview

Read the previous story first, then this interview of me on the day of the Walk. or do what you want, not that important.


9NEWS.com Colorado's Online News Leader Lighting up the night to help stop cancer

Light the Night, Velcade Slipping

First, the good news. I have attached photos from the Walk. We had over 1oo people walking for Dan's Team and raised more than $30,000. I think Colorado will be close to its $1 million goal. Darin and Liz Schanker, who live next to the park, hosted a prewalk party that felt like most of the 100 people showed up. Then they made a most generous donation to Light the Night, after Darin and his partner, Kyle Bachus had already made a very generous donation from their law firm. Many of you were very generous and I have begun working through my thank yous. Oh, and don't forget Darin & Kyle had special T shirts made (the green ones in the walk), the Colorado Trial Lawyers made special shirts (the gray ones) and our neighbor had his own special shirt made---Yes Dan Can. Two former grade school buddies, Bob Agnew and Bill Ehli, surprised me by showing up at the party and the walk--they now live in Denver, but I had no idea they would be at the Walk. Such support we get!! I can't list everyone as it would be hundreds of you.

The next day Susan, my friend John Sadwith and I toured the lab of a Ph.D. researcher at Denver National Jewish Hospital, Yosef Rafaeli, who is doing Leukemia Society funded research on myeloma. Not only did we learn about his current research, but more about his funding woes. Not surprisingly the grant monies are getting more and more difficult to find. He showed us the various instruments they use (e.g., $250,000 microscopes, and $40,000 stem cell separators, etc. etc.) and let us observe the actual stem cells. He is trying to do some exciting things and offered to talk with me at any time about my treatment, and what other treatment might be available. Oh, how Dr. Rifkin is going to start dreading my visits. Not really. I'm sure he is very well versed in the drugs that are in clinical trials, although, because he has a medical practice, he may not be tuned into the lab work being done. Should prove interesting in light of what's going on in my blood.....read on.

Thank you everyone for your support, in spirit and in contributions. I continue to be humbled by the support we continue to receive from all of you. You keep us going. See above the a link to an interview I did with Denver's Channel 9 News that tells you how I feel about all of you. You're the best!!!

And now for the numbers news. Not so good. My Iggs have risen to 1984, (500 point rise in 2 months). My Myeloma Protein that roughly measures the degree of myeloma in the blood has risen from 1.1 to 1.7 over the last 2 months. It has been higher, but is has also been below 1. So, although I was not scheduled to see Rifkin today, I saw him in the hall, grabbed him and asked for 1 minute. He very graciously stepped over, told me he had seen the numbers, was not worried (he's only expressed worry a couple of times as far as I can remember (July/August 2005 and August/September 2007--when the Iggs were above 5000.) He said he has a variety of new treatments he is considering. His short term plan is to have me finish this cycle of velcade/steroids, maybe give me "some time off" (not further defined), and then do something completely new---also undefined. I won't have my next meeting with him until October 27 and won't get my numbers until November 3rd. Seems like a long wait--another opportunity to work on living in the moment and letting go of those worries for the future. Yeh, it can be hard at times. In the meantime, I will be shceduling that lunch with Dr. Rafaeli to find out what looks promising on the research and clinical trial fronts. It's nice to be connected--again thanks to friends, John Sadwith and Chuck Turner (the executive director of the Colorado Bar Assn, and whose son is working with Dr. Rafaeli.)

Briefly, a few moments to let you inside Suz and my heads today. These are hard days, although not unexpected. We shared a few watery eyes, but no tears. We're stronger than we've ever been, physically, emotionally, psychologically and spiritually. We have honed the tools for this next regime, whatever it might bring. We find ourselves bracing, working even harder to build just a little more strength, before I get hit with the heavier stuff (we both hit the gym and then drove to the ashram in Boulder for an evening meditation). Fear is circling but we've learned to keep it out most of the time. We spent more time together today and had not the slightest of disagreements---even about my driving! Even though we're bracing, we soften. Julia and Catherine are conveying strength and confidence, but their concern is evident. Of course, this is all based on past changes in my treatment which were more difficult for me to handle. Perhaps there is an effective nontoxic drug waiting to be used on me. So, we'll hold on to that thought.

I spoke in August to the membership of the Colorado Trial Lawyers Convention about living lives of consequence. When you realize it could all end rather soon, (as it can for all of us, but mostly we don't have to think about that) the look back at what you've been doing naturally is filtered through a different lens. I have tried to busy myself, when I had the energy, mostly with volunteer activities that matter to me, such as the Leukemia Society and the Trial Lawyers work for consumers (when you call in sick or drop the ball on a volunteer activity people usually don't get mad or threaten to fire you). I think I actually took too much on as I'm feeling more tired these days and with the new treatment coming on, will probably reduce those activities to some degree, but certainly not altogether--completing the Light the Night walk and the promo work for it should help. But more importantly, doing things I like for causes that are meaningful to me feels like a good way to spend my days. That will continue. We will continue.

Thank you for all your support. We love you all.

Dan

Light the Night Round Three

The Leukemia and Lymphoma Society's Light the Night Walk will take place next week in Denver's Washington Park, on Thursday, September 25th. This is my 3rd year of participation and LLS and my goals for this walk are higher than ever before. LLS has set a goal for curing blood cancers by 2015. This year for the Colorado LLS walks they have set a goal of raising $1 million. And I have set a goal (with a big push from my friend John Sadwith) of raising $50,000 and having 100 people walk for Dan's Team. Ambitious but achievable-----with your help. You can contribute, or sign up to walk, or both, by going to this site:

http://www.active.com/donate/ltnDenver/2285_dpattersonLTN

Once a year I get on an airplane for a getaway. Susan and I are currently in Florida for a week at the beach. I have continued my swimming and have managed to swim about a mile along the coast. It feels so good, including the 2 1/2 hour nap I need afterwards! As I think about it, I marvel at the recovery I have achieved with the help of so many of you. Two years ago, in 2006, we spent two weeks at our friends, the Coyles, in East Hampton. I had to travel with a surgical mask on my face and had great difficulty as the flight aggravated my back. I could not swim but rather could only wade in the waves. Last year was better, but I was still quite wiped out, as my cancer levels were very high and Dr. Rifkin held off on treatment just to give us a chance to have a getaway for our 25th wedding anniversary. I did some swimming, but as Susan likes to remind me, I spent most of the time on the sofa. And this year......even though I have been on chemo for one full year, and will be for the indeterminate future, I am seeing so much improvement. Of course, this is my week off from chemo, which helps tremendously with my energy levels, but I am encouraged by the strength I have built up over the last year. May it continue.

And, looping back to Light the Night......much of the money raised through that event goes to support medical research. In fact, I will soon be visiting the lab of one of the researchers who LLS funds, in Denver, at National Jewish Hospital, to learn more about the research he is doing on blood cancer. Many drugs given to myeloma patients lose their effectiveness. Every month I wait with great anticipation for my "numbers" report, hoping for the best and fearing the worst---that the velcade isn't working. The more drugs that are "on the shelf", the more effective our treatment will be. That is why I work so hard to raise money for this event. I am committed to seeing that cure in 2015!!!! Thank you again for your support of this cause. And for my Colorado friends who will be walking, there is a party at Darin and Liz Schanker's home, on Washington Park, 818 S. Franklin, at around 4:30 p.m. on Sept. 25, for everyone to congregate , eat and drink, and go to the walk together. Hope to see you there.

Love and Light,
Dan

Numbers Rise But I'm Not Going There

Started this historic day in Denver in the infusion center (the Democratic National Convention is here). IGGs have moved to 1674, up from 1445. I am surprisingly unfazed. One other marker has gone down---beta 2 microglobulin is at 1.4, down from 1.7. The M protein (or M Spike), which measures the level of actual myeloma protein, was not available. I know that the IGGs can jump around a bit. I also know that in order for a "trend" to be identified, I need 3 points in a line. So this is but one point. Although fatigue is always an issue, life will go on.

Susan's cousin, Arlene, one of our regular bloggers, sent me a very interesting booklet called, "Year in Review---Multiple Myeloma: 2007-2008." It is most interesting because it sets forth the facts of numerous case studies and then asks four doctors how they would treat each patient. The four doctors are rarely in agreement. This booklet provides a very good overview of all treatments and these four doctors' views about when the different treatments should be used. My doc is clearly on top of all these therapies and, it appears to me, he is taking a conservative approach to my treatment, i.e., prescribing the fewest drugs and the lowest weekly dosage (only once a week). I am in complete agreement with his approach. Save the hammers for when the numbers run out of control. Thank you Arlene for sending this booklet.

Susan, Julia and I walked Denver's 16th Street Mall today and saw all the delegates, crazies, protestors, and heavily armed SWAT teams. Thousands of people milling around on the streets expressing their political views. It was great to see Democracy in action!!!

And finally, I'm told that if I mention John Sadwith's name one more time, he may win a prize on Google for blogger references. So here's to you John Sadwith, you are a great American.

I won't have another numbers report until early October. In the meantime, Susan and I will be taking a week's vacation in Florida; we had such a good time last year (although brother Mike won't be joining us this year). Until then,
Much love,
Dan

Where Have I Been??

Hello everyone,

It does seem that my blogging has slowed considerably this summer. From my perspective, this is a good thing. I guess it means I am spending less time sitting in front of the computer. Yes, that is a good thing.

But first the health news. I saw Rifkin Monday morning, had blood drawn, and will get my myleoma numbers next week. He is very encouraged at my continue stability. I have pushed him over the past several months about getting a month or two break from the chemo. It has now been 11 straight months of chemo, and although I tolerate it fairly well, it does take a toll. I mean how many of us really want to ride a roller coaster every week for a year? No, not fun, even in an amusement park.

In past months Rifkin seemed open to a break, but not so much yesterday. I guess he was just humoring me. Anyway, he ducked and dodged his way around my questions and I quickly concluded that he was not interested in discussing the issue. He continues to want to wait for completion of the clinical trials of Heat Shock Protein 90 (HSP 90)--the nontoxic chemo. You may recall from past postings that I did not qualify for the clinical trial because of my prostate cancer. Interestingly and as further confirmation of my doctor being deeply connected to current research, recently I met a man about my age who is be treated at Mayo for his myeloma. He carefully selected his doctor, is quite wealthy, is independently funding research and urged me to at least consider seeing his doctor. I talked with Rifkin about that today and learned that, in fact, Rifkin is working with this same doctor at Mayo. They are working on the clinical trials and will copublish the results. I continue to know I am in good hands.

So, what have I been doing? My involvement in the Leukemia and Lymphoma Society (LLS) has increased as we gear up for the Light the Night Walk in Denver on September 25th at Washington Park. The link for my fundraising site is: http://www.active.com/donate/ltnDenver/2285_dpattersonLTN. You can contribute right now by clicking on the link. My goal has jumped from $10,000 my first year (2006)--we raised $13,000. In 2007 I set a goal of $13,000 and raised $25,000. So this year, naturally my goal is now $25,000. The generosity of the Colorado Trial Lawyers and John Sadwith, and Darin Schanker (outgoing president) in particular, are responsible for much of the money raised; but that is certainly not to diminish the contributions of the many of you have donated and I am grateful for any and all contributions. Any amounts are appreciated. This year the trial lawyers, through John's hard work and generosity, once again, have already raised more that $6000 by sponsoring a suite at a Nuggets game. (those donations haven't yet been logged on the site, but soon will). For those who live in Denver, even if you can't donate please consider walking with us that night. It is quite a scene as thousands of walkers parade around the lakes of Washington Park at twilight carrying lighted balloons, in support of all those touched by blood cancers.

The LLS has asked me to speak at 4 or 5 events over the past couple of months--to tell the story of my ongoing struggle with blood cancer. I also was asked to film a spot with Comcast that will run once a day in September in Colorado on CNN Headline News. The spot is a 4 minute interview about LLS and Light the Night, with a smattering of my own struggles. After the interview I went home and took a 2 hour nap. Susan asked why I was so tired and all I could say was, "I now know what it's like to be a movie star!" Just kidding, of course, as I can take a nap anytime, any place. No, don't worry, this has not gone to my head. The response of the audiences I speak to is quite moving, and I am optimistic that with my help Colorado will reach its goal of raising $1 million in its Light the Night Walks this year. The LLS has set a goal of finding a cure for blood cancer by 2015. Of course, I am deeply committed to that goal. I continue to be very grateful for your continued support of this cause.

And I was recently installed as the president of the Colorado Trial Lawyers Association. Despite my numerous attempts to resign over the past 3 years, the association rejected those resignations, and elected me president last week. I am the first non trial lawyer, or mediator, to serve in that position. A number of people cautioned me against it, arguing that this will hurt my mediation practice, which I really need, in order to keep my health insurance in place. But, having looked over the abyss and realizing that my number can come up at any time, I have carefully chosen to use whatever energy I have to be involved in those activities that have meaning to me. The list?----(1) Taking care of my health, (2) spending time with Susan, Catherine, Julia, my mom, brothers, sister, and friends, (3) working at mediation in order to keep my health insurance in place and (4) working for worthwhile causes, i.e., LLS and Colorado Trial Lawyers. Why CTLA you might ask? Because it stands for protecting the rights of individual rights and keeping the courts open to everyone, without regard to status, privilege, wealth, or lack of all three. As an association we support both Democrats and Republicans, as we judge our supporters on their philosophical support of our mission, as opposed to their political party affiliation. I've discovered the wonderful thing about doing volunteer work is that however much or little work I do, it is always appreciated and when I can't follow through or show up; no one gets mad at me and they are highly unlikely to fire me. The LLS is quite tolerant of me, as I regularly get lost trying to get to my new venue for my short speech. Rifkin rejects the notion that these difficulties are due to aging and unequivocally attributes it to chemo brain. I find small consolation in that news. Along with a few other strange behaviors my family thinks I've just gone further off the deep end. Oh well, I may be crazy but I'm still here!

So that's where I've been. I continue to meditate daily and exercise regularly, as well as take my daily dose of the magic juice. Stability continues along with some semblance of peace of mind despite the weekly steroid roller coaster. In spite of it all I find happiness during most hours of every day. I am so grateful for the love and support I receive from so many and feel that this terminal disease has opened my life to wonders I never would have experienced without having been forced to walk through the fire. Thank you again for staying with us. I am humbled by your generosity and support.

With much love,

Dan