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