Wednesday, February 25, 2009


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
--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,

Monday, February 23, 2009

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.

Friday, February 20, 2009

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.

Wednesday, February 18, 2009

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,
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.

Thursday, February 12, 2009

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.

Tuesday, February 10, 2009

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,

Saturday, February 07, 2009

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.