Holding Steady

Not much change in "the numbers" from last week. IGGs are 3500 (3470 last week); white count 2.8, down from 3.9 (but the more important neutrafils are 2.4--a good number), red count and platelets a bit down from last week. Rifkin thinks the steroids are keeping me in some sort of holding pattern, which in his view is good, as it is giving my bone marrow more time to heal. He prefers to keep me off any treatment (other than steroids) for as long as possible. He also is not currently too fond of either of Dr. Barlogie's suggestions (carfilzomib and pomalidomide) as they both have myelosuppressive characteristics, meaning they can drive down the white and red cells and platelets. Since mine are down already, he doesn't want to harm them any more. I'm also unlikely to qualify for the carfilzomib trial because of my extensive chemo treatment. No word on whether I'm eligible for the pomalidomide trial.

We had a rather sobering conversation about his view that I likely have suffered permanent injury to my bone marrow from the Arkansas chemo regimes and that injury has limited my treatment options. I've discussed this "bet the company" approach in previous posts so I won't repeat it here. On the drive home I felt forced to review with Susan one more time our discussion with Dr. B regarding whether the "super beam plus" chemo would limit my future treatment and she, like me, remembers him being very clear that I would not have any future limitations, other than I could not ever again receive the "super beam" treatment. It's difficult not to get angry about this situation, but I know it is not healthy to go to that place in my mind, so I'm getting pretty good at staying away from it, until it comes up in my treatment discussions with Rifkin. Please understand that Rifkin does not volunteer his views, but offers them only after much pushing, prodding and questioning by me. I'm always trying to find out what new drugs are on the horizon and might be available to me, and I keep running into these barriers created by the Arkansas experience, like your bone marrow can't withstand that kind of treatment. The picture has changed signficantly since the "super beam", and needless to say that becomes very frustrating. Catherine went ballistic last night when she learned the extent of the problem and the limits to what can be done for me now.


That being said, let me say that I continue to be the optimist. I certainly feel better than I did 4 months ago, although I feel like I've reached a plateau of sorts, i.e., I'm not getting any worse, but my efforts at restoring my strength and muscle only seem to keep me treading water. I think this is due to the muscle wasting feature of the steroids. At some point we'll have to start trying to reduce the cancer levels. When that decision is made there are 2 potential drugs that aren't myelosuppressive--thalidomide and HSP-90. Thalidomide is available, HSP-90 is not currently available. HSP-90 is a better drug since it has very few, if any, side effects, but apparently the manufacturer didn't make enough of it to produce more after the completion of the clinical trials.



A few weeks ago I completed my "service" as president of the Colorado Trial Lawyers Ass'n and am now officially a past president. Although I tried to resign 3 times over the past 5 years (all of which were rejected by my fellow officers), and I only served as president for a couple of meetings, the association was extremely generous in thanking me for my service and bestowed its thanks to me in the form of a new, lighter bike. I am completely undeserving of such thanks, but am so proud to have been able to serve as president, even if for only a short amount of time. Our many trial lawyer friends have been so generous and supportive. I do wish the American public would hear more of these kinds of stories, showing what big hearts trial lawyers have, instead of the lawyer bashing that seems so popular these days. This comment is certainly not intended to diminish all the support we have received from our family and nonlawyer friends. My point is only that as a group, the trial lawyers have come forth to assist one of their own, even though, for many of them, I may have been more of a professional acquaintenance than a close friend. Of course, now they are all my close friends.

The best news of the week? Rifkin gave me a 2 week break from my clinic visits. No sticks, pokes, or blood draws!
With much gratitude and love,
Dan

On the Road Again?

Eight months of my cancer levels running between 50% and 90% and my bone density is normal! Amazing. Is this one of those....if it sounds too good to be true? Well, we won't have a retest on the bone density scan for some time, so absent some unexplained bone breaks, we'll accept the news as good. Maybe I should have realized my bones were OK when I fell out of bed in the middle of the night a few weeks ago, and although I had a bump on my head and a bruise on my back, no bones broke. Of course, I'm so zonked from the meds I take at night for my neuropathies that I have only a hazy memory of Susan trying to get me off the floor. The scan was much less painful.

Blood work today continues in the stable range. White count up to 4.9, red cells holding and platelets at 109. Slowly we move, but in the right direction. I continue to have to take exjade to draw the iron out of my liver but that is giving my GI tract fits, especially when I have to take it with potassium, which I've had to do for the last week. Suffice to say I can't stray very far from the house.

We talked with Rifkin today about the two drugs recommended by Barlogie: carfilzomib and pomalidomide. Both are in phase II clinical trials. Therefore, I have to qualify for the trial protocol. Rifkin doesn't think I can qualify for the carfilzomib trial. He sent some emails to friends of his at Mayo (in Scottsdale, AZ) and MD Anderson (in Houston) to see if I could get into the clinical trials they are running with pomalidomide. He's also meeting with the manufacturer's (Celegene) regional rep this week to discuss what trials I might qualify for. Anyway, I'm still not ready to enroll as my bone marrow is not yet fully recovered. I asked Rifkin if I am accepted into a trial does that mean I have to take up residence there. He said I'd probably have to go there, but not take up residence. He might even be able to get me permission to join the trial and be supervised by him here in Denver. Who would have predicted that my myeloma would bring with it a tour of the country? I think Susan and I should buy a big old school bus, paint it in psychedelic day glow paint and hit the road, stopping at all the medical centers in the country. Remember the Merry Pranksters? Wavy Gravy? The only difference is that my drugs are legal!! Oh, what a strange trip it's been. If you don't know what I'm talking about, you're just too damn young.

In the meantime life continues at its slow pace. My fatigue seems to be increasing and I'm back to 2 hour naps every day. I've been so tired lately that I was sure I would need a transfusion today, but red count has held. Then I remembered that following the first transplant I was exhausted for almost a year, and I didn't have nearly as much chemo as I did this time. The fatigue comes in waves, so I guess I'll just keep riding it.

That's all for now. This blog continues to get 50 to 70 visitors a day. Thank you every one of you for your support. We are very grateful.
Love,
Dan

Ruminations on 'Roids

1:00 a.m. Can't sleep once again, despite more drugs that should be knocking me out (Lunesta, neurontin, ativan). Rifkin told me that after a while the ups and downs from the roids would even out. I haven't noticed. Bone density scan today. Lots of walking around the hospital looking for the scanning room (I located it with the name "Women's Imaging Clinic." There were no images of women that I could see. I guess women's imaging refers to women's issues with osteoporosis). All the walking reminded me of Arkansas, which is not a good memory to revive.

Rifkin is looking for clinical trials to enroll me in for pomalidomide. Based on my research there are trials still recruiting participants, provided I met the eligibility requirements. He thinks it will be easier to get in a pomalidomide trial as opposed to carfilzomib. Still an issue around how hard the drug will be on my white/red counts and platelets. He continues to be very concerned re allowing the bone marrow to recover. Stability in the IGGs also continues. New numbers are 3430, down from 3500, down from 4500 about 3 or 4 weeks ago.

After living in Denver for 30 years, I finally got my first juror summons. Now, there was a time I would do just about anything to be able to sit on a jury. Talked about it with Dr. Rifkin and he said, no go. Too many issues regarding my abillity sit for more than a couple of hours due to my back issues, the need to check my blood chemistry every Monday, and the possibility of transfusions, or testing during the week. I used to pick juries and now I can't even sit on one! How low can one go? Oh well, the odds of my staying on a jury would be quite low anyway.

Susan and I celebrate our 27th anniversary tomorrow. Anyone who reads this blog knows my feelings for her and my deep appreciation for how she has cared for me during the last 4 years. She is special and we work so well together. She rants about this and that (she is a New Yorker after all) and I laugh. Whatever works, right?

I think one or more of my drugs must be kicking in. Maybe I'll get some sleep tonight. Later.
Dan

Carfilzomib or Pomalidomide Anyone?

Monday means a visit with Dr. Rifkin. White count/red count/platelets all are OK (for me, not the general population). No shots or transfusions this week. Latest IGGs are 3500; M protein is 2.9. Continuing the slow downward drift (IGGs were above 4500 about 3 weeks ago). It feels like things are calming down. I will have a bone density scan this week to see what this nastiness has done to my bones these past several months. I had this test about 3 years ago so we have some baseline to compare it to. Previous scan was quite good, given my 15 compression fractures and broken rib. I'll probably also be started on zometa, a bone hardener. I was on that about 2 or 3 years ago also. It just means longer clinic visits to get the IV dripped into my veins.



As of the meeting today with Rifkin we had not heard from Barlogie, but Rifkin finally emailed him during my visit today and Dr. B replied instantly. He suggested Rifkin look at putting me on one of two new drugs: carfilzomib or pomalidomide. (Does this mean he's no longer trying to blast the MM out of me? Can you hear my sigh of relief?) I know about both of these drugs and have been following their development and clinical trials for a couple of years. Carfilzomib is a proteanase inhibitor, like velcade. Pomalidomide is a derivative of thalidomide. I don't think they are FDA approved yet, only in clinical trials, so I'm wondering how I'll get them or whether I need to enroll in the trials. As I started obsessing on this Susan told me to calm down as she is confident with Barlogie and Rifkin as my docs, they'll find a way to get me the drugs I need. Results from the trials are encouraging, especially carfilzomib for people like me who have had a lot of treatment. Both seem to have some depressive effect on the white and red cell counts so I'm wondering what that means in light of my poorly functioning bone marrow. Until Rifkin determines which way to go I'll stay on the steroids I guess. I feel worn out with them, primarily with this every other day stuff. I was up until 3 a.m. last night. But the blood counts seem to have stabilized and I'll have to admit that a few months ago I wasn't so sure where this was going. (Not that I have any idea now). We're not out of the woods, but we've managed to stay in this holding pattern. In addition to the same old fatigue/neuropathy/back issues, I'm now taking a drug specifically to reduce iron from too many transfusions (X-Jade). This wreaks havoc with my GI tract, as is typical with most drugs I take, it seems.

I invite you medically knowledgeable bloggers to tell me what you know about carfilzomib or pomalidomide. Best to you all. Have a good week.
Dan

Stable

The visit with Dr. Rifkin today was good, only in that it didn't bring any bad news. The prednisone seems to be helping a bit in keeping the white cells and red cells above critical levels. So, no neupogyn shots and no transfusions this week. Platelets are at 97 (normal being 150). They plummeted to 10 when I first arrived in Denver in May. IGGs have moved from 4500, to 4300, to 4000, to 3850. No significant movement, but holding steady in a downward fashion, which is better than the other way. Rifkin thinks we might see a bit more downward movement in the IGGs in the next 2 to 4 weeks while on the steroids. Then, depending on how I'm doing, he may start me on some thalidomide to see if we can hit those cancer levels. Slow and steady. After 3 weeks on the steroids I can already feel the "muscle wasting effect." The little bit of strength I regained in physical therapy is quickly evaporating. Frustrating. My energy levels are also dropping as I ride the ups and downs of one day on, one day off with the steroids. And then there is the weight gain. Which is good, except that the weight gain is unmanageable. Last go round I put on 50 pounds! And Susan told me I look so good at 170. Oh well, luckily I didn't throw out any of those XXL sizes I bought 3 years ago.

So far no contact from my doctor in Little Rock, despite numerous requests for a phone consult with Rifkin. Go figure. I'll withhold further comment for now.

Have a good week everyone. We're still tickin' along, one foot in front of the other, one day at a time.
Dan

Lab Rat

After 2 weeks of steroids the white and red cells seem to be holding. The stability may be illusory, but it keeps me from getting a shot or a transfusion, and may allow more therapy, such as thalidomide. Will know more on Monday. Received an email from Arkansas today saying Barlogie just received a letter from Rifkin and Dr. B doesn't agree with Dr. R. My short response to the nurse was to the effect of, "Have Dr. B call Dr. R and talk about this." Duh! Am I supposed to get in middle of this? Based on my knowledge of biology, hematology, oncology, pharmacology, and medicine, I shouldn't be in the same room with these docs. It seems I've gotten myself smack dab in the middle of the debate between blast it out of existence and manage the disease. That being said, I do know that I won't get in the line of fire of any treatment loaded with high dose chemo. After 4 1/2 years, "blast it" has not worked at all with my cells. (both unsuccesful transplants were preceded by high dose chemo regimes.) "This should prove to be very interesting," said the lab rat.

Dan

Inside Looking Out

I think I'll start from the beginning. That is, when I first considered going to Arkansas for treatment. Many of you were with me in those early postings last November and December. In brief, my maintenance treatment here was no longer working. Rifkin had not articulated a definitive treatment plan. And quite frankly, I was encouraged by my meetings with Barlogie that he might get me into remission (I was, after all, "low risk", according to his testing). Almost 4 years of treatment made us all want to believe this nightmare might be brought to an end. Well, 2 months delay in getting treatment (again, Barlogie thought it better for introduction of his protocol that I not be in the middle of a treatment regime), and my cancer levels jumped from a stable 10%--12% to 90%. Change of plans, hit me with everything in the cupboard. Spare no cell in my body from the assault.

And herein lies the great divide between the Arkansas treatment plan and that used by Rifkin, Mayo, and a number of other cancer centers. Blast it out of existence vs. manage it with a combination of drugs. Each has its risks. Neither is a "cure". Being in remission does not equal being cured. Managing the disease is not remission. No one has the answer. As you all know the "blast it out of existence" approach didn't work for me. Instead I now bear the scars of that unsuccessful approach, which is marginally functional bone marrow, completely numb feet, and skin that flakes off like dandruff. And those scars (primarily the injured bone marrow) now impede my ability to withstand even the mildest of treatments. I am not one to look back and live with regrets. I made my decision with as much info as I could ingest. I know that had I stayed in Denver for treatment that course may not have been successful either, and I might now be shuffling off to Little Rock for treatment. That being said, I must admit I am extremely frustrated that my Arkansas treatment regime has left me in a state where I can currently receive minimal treatment for a disease that is "angry", as both my doctors say. As a former trial lawyer, it feels like I've just gone through a "bet the company" piece of litigation, and haven't fared very well. I always counseled my clients against taking things to the brink--too risky and they needed to be able to afford losing it all. And I must say that I never appreciated that the super beam plus chemo along with the transplant was an "all-in" bet, that might leave me with no more chips to bet. I even specifically asked whether the super beam plus chemo would prevent me receiving a transplant in the future (whether from my own cells or my brothers'). The answer: absolutely not! hmmmmm. So, you ask, what's my point, other than venting? I'm not sure, except to say, sometimes learning the lesson, once again, that we can't see into the future can be very frustrating and difficult.

So, on to the current numbers and the plan. Plasma cells (which are the cancerous ones generated by myeloma) are at 75%. They were 50% when we left Arkansas. They were at 90% or higher before the transplant. The disease is still "angry" according to Rifkin. More info on things such as "flow", that I don't really understand, will be available next week. The plan? Rifkin told me there were 2 courses of action: blast it or go at it with more finesse. Blasting it, per Rifkin, would likely leave me with bone marrow that will never recover. He didn't recommend that course but said that is undoubtedly what would happen if I were in Arkansas. (My marrow is slowly recovering. This is the first time since I returned to Denver that I have not needed a blood transfusion within 2 weeks of my last one. The white count is now 2.0, having received a neupogyn shot last Monday. Slow progress---but progress) Back to Rifkin: I didn't even consider the "blast" given the difficulties I have had since receiving the high dose chemo in early April. He says he does not want to give me any mylosuppresants, i.e., drugs that might potentially suppress the myeloma, as those drugs would also adversely affect my white and red cell counts. So I'm starting a regime of prednisone, 50 mg., every other day. Roid rage anyone? If this holds the myeloma or brings the numbers down, then he will introduce another drug (perhaps thalidomide). If that works to some degree, and my white/red counts are stable, then perhaps another drug, and so on.

The watchword is patience. Whether it takes 6 months, a year, or two years, I am confident the cancer will begin to lose its anger (no one or no thing can stay mad forever--it is a law of nature), the counts will stabilize and new treatments will begin to surface. Susan and I have been through this before. We have tapped our inner resources like never before. We know that is the source of the strength to weather this storm. Susan has been the most unbelievable pillar of support for me and she continues to show that behind those tears that constantly flow is a block of granite so solid that no storm could crack it. Similarly, Catherine and Julia are worried but steadfast in their resolve to help us through this. Catherine told me she is very frustrated with that cancer and is going to have to have a stern talk with it. Go get 'em Cate!

As we walked out of the cancer center I looked at Suz and she at me. We could see the love we have for one another in each other's eyes. We're more in love than ever. Funny how life's most difficult moments also bring blessings. And though we have to walk this difficult path, it is a long road but we're gonna make it.

Much love to all of you.
Dan

Digging for Bone Marrow

Monday was the day for the bone marrow biopsy, to be conducted by none other than Dr. Rifkin himself. It's usually done by a medical technician. I'm not sure why I got such special attention. Having been through a biopsy without anesthesia, of course I requested it (IV fentanyl and verced). Then, I forgot that I wasn't supposed to eat for 6 hours before the procedure. Not wanting to vomit all over the examining room, I confessed my sin and was promptly told that there would be no sedation given. All I would get would be an ativan to relax me. Ativan is not a pain killer. So be it. I could've rescheduled, but I want to know what's going on in my bone marrow and I knew the pain would be temporary. Rifkin was quite good at the procedure, i.e., it didn't hurt that much, even though he had great difficulty getting a core of the hip bone as it is too soft from all the treatment I've received. My ability to withstand the procedure without anesthesia is either due to the 12 bone marrows that I had down in Arkansas that prepped me for this experience, Dr. Rifkin's good steady hands, or the fact that my nerves are shot and I can't feel anything anymore. We'll get the results next Monday.

Otherwise not much has changed in my blood work. I can't seem to generate either white cells or red cells on a consistent basis. I'm hoping the bone marrow biopsy will shed some light on the cause of this problem, but I'm not sure it will. It may just be a matter of time.

Otherwise things are pretty slow around here. I spend too much time at doctor's offices. I am noticing a return of some energy which is encouraging. You all know the drill: slam me to the floor with chemo, watch me struggle to get upright, regain some weight and muscle and start feeling better, then slam me with more chemo. I certainly prefer to be in the strength gathering and weight gaining phase, which is where I am now. I try not to think about what's coming. One can actually paste together a life while riding this roller coaster, albeit not too active, but nonetheless a life, as long as one keeps his eyes looking upward. Speaking of which, I must emphasize again how much I am enjoying being back in Colorado. The summer weather here is so temperate and beautiful. And the skies are always a deep blue with a few scattered clouds (except for the afternoon shower). Every day I am thankful to be back home. Why, I hardly think about Arkansas anymore (and that's a very good thing).

My best to all.
Dan

Wishing For Some Control

One of the difficult aspects of this, and many diseases, is the feeling of powerlessness. What can I do to improve my situation, short of following doctor's orders? The western medical approach is: not much, try some exercise and eat balanced meals. I find myself searching for more avenues that might aid me in my body's efforts to heal. More on that later. First, the status report: IGGs back up to 4020 and M spike at 3.3. Given all the bouncing around, this is considered stable. White count is at 2.0, after getting neupogyn a week ago, and hematocrit is 23.5, hemoglobin 8.2. Those last 2 numbers require another transfusion--2 weeks after the last transfusion, which I'm headed for in about 30 minutes. So, Rifkin says my bone marrow seems stuck and we'll need to take a look at the bone marrow--bone marrow biopsy next Monday. This stuck bone marrow is of most concern as any significant treatment will likely require some level of functioning by my bone marrow in order to allow me some ability to recover from the treatments.

I started some acupuncture about 3 weeks ago to try to get some relief for my peripheral neuropathies in my feet--shooting pains and numbness. Not much success on that front. I saw a Chinese herbalist this morning for my thrush. He seems to have the greatest knowledge of where my imbalances lie and what I can do diet wise to try to restore balance. I had a very interesting discussion with him about my body's energy, the imbalances that are making it difficult for the bone marrow to recover and what can be done about it. This is also at the core of the thrush or coating on my tongue. As he said, it is but a symptom of the imbalance in the body. Now, I have been taking some concentrated vegetable soup from a Dr. in the UK, upon recommendation of a close friend who has had some success with this guy's product. He requires, as part of his regime, that I abstain from eating any meat or fish.

The Chinese doctor, on the other hand, counseled against a strict vegetarian diet because of my low red cell count. He said the best source of nutrients to aid in the production of red cells is red meat. Makes sense right? He provided a number of dietary recommendations along with some herbal tea to address the imbalances. He also counseled against acupuncture at this time because of my low white cell count--don't want to risk an infection. I had actually been reading about that risk, along with some other literature that said acupuncture may not be beneficial if you have a low white count. Rifkin knows of my trying acupuncture but had no opinions. Trying to exercise some control requires the balancing of conflicting opinions. And maybe it is all for naught. But I have to feel like I am trying to help myself so I proceed and try to do what makes most sense. Could it be that no one knows? It often seems that east and west will never meet and they go their very separate and disparate ways in efforts to treat disease. And the patient is caught in the middle.

And with that I will close. I am always thankful for everyone's support and continue to see this as a journey, no matter how difficult it may seem at any one point.
With much love and continued hope,
Dan

Bouncing Around (With Addendum)

My numbers continue to move around. First, the bone marrow results: 10 days ago the IGGs dropped from 3860 to 3580, and the M spike went from 3.4 to 3.0, giving me some false hope that maybe the cancer was on a downswing. Then the IGGs jumped last week to 4370, M spike 3.4. We're hoping the numbers continue to bounce. The good news is that for the first time since I returned home, I managed to go a week and keep my white count above 2.0 (it's 2.2). Below 2.0 is the standard benchmark for getting a growth factor shot (neupogyn). So, the bone marrow is doing some work and Rifkin has optimism it will continue to improve. Similarly, platelets are holding and actually going up--now up to 67, still a far cry from the normal of 150, but also a good improvement over the below 20 readings I was getting a month ago. Red cells are holding also; haven't had a transfusion in 10 days, which is good, since my iron is highly elevated due to all the transfusions I've had (apparently the body often holds onto iron as a result of many transfusions). Thus, I get a new drug to offset that!



So where do we go from here? Rifkin said that data just came in showing a combination of thalidomide, at low dose (50 mg every other day) and predisone (also 50 mg every other day) works very well for maintenace therapy. We will be starting this in the new future. Thalidomide is a good drug for now because it doesn't affect the blood counts. Thalidomide and dexamethasone (steroid) were my first line of therapy more than 4 years ago and I responded very well, although the dosage was 200 mg, not 50. But Rifkin says 200 mg isn't used any more because of the side effects. Anyway, more treatment is around the corner. Let's all cross our fingers in a collective prayer/wish for this regime to rein in these IGGs and bring these cancer levels down.



For those of you who don't care to follow these numbers, here is my narrative: I feel a lot better than when I first returned home, although my energy still fluctuates quite a bit, and most evenings I'm pretty wiped out. I rode my bike about 8 to 10 miles on Saturday and I think I'm still recovering! In February John Sadwith called me in Little Rock and asked if I would be home by June 21, as he wanted to get us tickets to see Eric Clapton and Steve Windwood. Well, Susan, the girls and I joined John and other friends of his in a suite at the Pepsi Center for some rockin and rollin on June 21. It certainly reminded me of some good times in my wasted youth!

I'm trying acupuncture for my neuropathies but so far no response (only 2 treatments), and I still have thrush so I'm going to turn to the Chinese herbalist recommended by a friend. I've been on gentian violet for the thrush (made from the blossom of the gentian plant)--a home remedy recommended by someone. It took care of most of the thrush but can't seem to eradicate it.

Despite it all Susan and the girls remain in good spirits and won't let me engage in any self pity. I can't say things are back to normal, but life does go on. Our best to all. Have a Happy 4th of July.
Dan

Addendum: Since this posting, new IGGs are at 3720, down 650 from 5 days ago. All this bouncing around only means, at best, my cancer levels are relatively stable.

Coaxing the Bone Marrow

The progress is slow, but at least it's progress. My white count seems to hold for about a week, then it drops below 2.0 (normal being 3.0 to 10.0), and I need another growth factor shot (neupogyn). When I first arrived in Denver I was getting 2 to 3 shots a week. Similarly, the red cells seem to hold for about 2 weeks following a transfusion, then drop. Platelets haven't moved downward in awhile, although they are still a long way from normal ( 58, when normal is 150 to 300). The myeloma markers are bouncing a bit. Last week they dropped to 3660, then up to 3990 and today's report shows them at 3760. Rifkin is hoping they continue to bounce, thereby signalling some sort of plateau and giving my bone marrow more time to heal. Another bone marrow biopsy is around the corner, which will give us a better sense of what levels of cancer we're dealing with and may dictate what course of action we take.

This is tricky stuff. I tried to get some answers today from Rifkin about what the next course might be, but he was noncommital--depends on too many variables. But I did learn this much: He is hoping that a new drug HSP-90 gets approved soon as he thinks its clinical trials showed very good responses. The trials are closed but he doesn't know where this drug in the approval process. He also said he cannot hit me with too harsh a chemo as he fears my bone marrow would never recover. Another transplant is likely in the works (mini allo, i.e., from one of my brothers), but it's too soon to know when that might occur. I need more time to recover and as long as my cancer levels aren't too worrisome, he will continue to keep me off the chemo drugs and steroids.

The body rash is gone and the thrush has diminished but it is a bear to get rid of. The most effective treatment (after more than $100 for 3 different medications) is papaya lozenges, which were suggested by my dermatologist. I'm still looking for the treatment to drive this stuff out of my mouth so I can taste food again.

So I try to go on with a life. I have more energy than a month ago, am going to physical therapy and riding my bike quite regularly; not far but it at least gets the parts moving. (that's my "parts", not the bike's!), and I try not to think about what lies ahead. A mental challenge to say the least. I continue to be very glad to be home. Seeing friends and just getting out to some familiar haunts occasionally is good for my soul. I continue to believe we will navigate these waters as well, especially with all of your help.

I continue to be very grateful for everything we have received these past 4 1/2 years. The blessings have been bountiful.
Love to all,
Dan

Status After A Month Back in Denver

First, picking up where the last posting left off--the bike ride. Prior to embarking on the Little Rock aggressive chemo regime, I was able to ski for 4 hours, or ride my bike 15 or more miles, or swim a mile. The bike ride last week, a mere 2 miles, just about did me in. Not enough, however, to stop me from doing it again the next day, which further leveled me. Today, however, the 2 miles were easier. Strength is gradually returning thanks to physical therapy twice a week. I've also gained 6 pounds in the last 10 days or so--although I lost 5 pounds in the first week back, so I'm a net + 1 pound since returning home. The appetite is improving, although the taste buds are still impaired from the thrush I have had for the past 6 weeks. That also is improving but quite resistant--I'm on my 3rd medication. And then there's the rash, which appears to be history. At first it was thought to be graft host disease, but given the rapid improvement once I started administering a steroid ointment, the thought now is that it was my body's reaction to the thrush, an "oh my god, what is happening to me now" kind of reaction, as explained by my dermatologist. Never heard of that before.



And now the "numbers" report. Myeloma markers (IGGs) jumped from 3800 to 4200 early last week, which caused me much concern, given that my white and red cell counts, as well as my platelets have not yet returned to normal or stabilized. Dr. Rifkin was about to start me on some steroids to try to contain the upward movement of the myeloma, but decided to wait to give me a few more days to continue to "heal", as he put it. Then I get new myeloma numbers: IGGs drop to 3660. Go figure. No treatment and numbers are going down--contrary to the trend over the past month? I didn't believe it, and emailed Arkansas and requested that they ask the lab to verify that number. Six hours later I'm told the lab says the IGG number is correct. I don't know whether we are on a downward trend or just bouncing around, as can happen. The next week or so will tell the tale I guess.



I should note that 2 days before the blood was drawn which resulted in the lower IGG number I started drinking a concentrated vegetable potion that a close friend sent to me. She has been trying to get me to take this for a couple of years, but I have resisted primarily because I didn't know whether it would interfere with the chemo I was taking. Now that I'm chemo free I thought I would give it a try. I would be surprised if some change in IGGs could result from just 2 days of ingesting this new potion. I will, nevertheless, continue to take it as long as I am not on any chemo.



The adjustment to being back home has not been as easy as I expected, but is getting better. The first couple of weeks we were so wiped out we could hardly do much. Then we got the news that my blood counts were not recovering. Then we got hit with a major flood in Julia's room (in the basement) from a heavy spring rain--the third year in a row, despite having hired people each to fix the problem. New contractor has now deposited big piles of dirt on our front lawn as he digs around the foundation to locate the problem. Meanwhile Julia is displaced from her room once again. But, after a month we are returning to some semblance of a life. Susan is pulling out the depression that we both suffered as a result of the lengthy stay in Little Rock with little progress in terms of eradicating this myeloma. I've got more energy and hope that my blood counts stabilize in the next couple of weeks so we can develop strategy for getting back at this myeloma. In the meantime I have tried to get more involved in the trial lawyer's work as I am still the president, even though I've not done much for the association in the past 6 months. In addition, I continue to do what I can to regain my strength. I desperately would love to return to my swimming but I'm sure I won't be allowed in the pool until the white cells have been normal for a few weeks or more.



So that's the scoop for now. Hope you are all enjoying the beginning of summer as much as I am.

Dan

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