How's Dave Doing?

Kicked to the Curb by Kaiser

2011-07-06T07:19:00.001-07:00

Dave has been a Kaiser member for 17 years, via two different workplaces. The company he was recently working for went belly-up so now he's looking for full-time work and looking for health care.

We knew things weren't going so well at Dave's last company, and knowing he had two life threatening chronic health problems, I tried to call and get another health care option lined up ahead of time. Which was useless. Everyone I talked to told me to call back after Dave was laid off and after his health insurance had expired. Until then, they wouldn't answer any questions.

After we got a notice in the mail from Kaiser, saying his insurance was terminated, we visited them to look into their "options for continued coverage" (noted in the handy little full color brochure enclosed with the "you're terminated" letter.) It was one of those surreal experiences with a smiling functionary behind a desk, telling you how screwed you were. Felt like we were in a Michael Moore movie.

You could get Cobra through your employer . . . oh, your company employed less than 20 people? Then they weren't required to carry Cobra.

You could apply for individual coverage but you'd probably be denied for having a pre-existing condition.

Even though I've been a Kaiser patient for 17 years?

You'd be just like everyone else.

You could use one of our "conversion plans" (which allows you to buy our insurance at obscenely high prices, but we won't reject you for having a pre-existing condition.)

Gee honey, which should we choose, homelessness, or nor health care (hunger is pretty much a given.) Aren't there any other options?

You could apply for Healthy San Francisco but they won't accept you unless you've been uninsured for 90 days.

So I the meantime? When my Coumadin runs out? Wait until that big clot gets bad enough to kill me and then hope I get to an emergency room in time?

Doesn't it seem a little bit insane that an organization that calls itself a "health care" organization, that claims to care about the health maintenance of its members, would look at a member like Dave (still being monitored and treated for Leukemia and a blood clot in the leg) and just cut off communications with that member? No effort at transitioning them to other caregivers, no diagnosis-specific advice about how to prevent his health problems from spiraling out of control. **It's ALL ABOUT THE MONEY!** "Pay up or die" - that's the true Kaiser ethos.

-- Anna

More and More

2010-10-02T14:59:00.001-07:00

It seems as if each year is busier than the last. That's very good in a way: I have the energy to keep up and I actually add items to our calendar.

After quite a few years of constantly feeling run down and so out of shape, it's amazing to be able leave the office after a day of work and head downtown, meet a group of friends, go gallery hopping, then out to dinner and enjoy long debates and discussions about art and photography and publishing.

When I do find myself slowing down it's because I've spent so much time on my feet and my aging joints are screaming. I enjoy walking and I've been walking so much in the last year my feet and knees are really showing the signs of taking a beating. I've also put new street tires on my bike, but biking actually helps my knees.

The nature of my job is such that my mind is seldom far from thoughts of my own work. I'm able to devote more and more time to my photography, which is consuming more and more of my entire being, which is just fine with me.

It's been three years since I ended the chemo treatment and almost a year since my last Rituxan infusion. My numbers remain good and are fluctuating well within the range of normal. I saw my doctor last month and he said that after my next visit in March of next year we will probably schedule the next two visits eights months apart then go to once a year.

The goal now is to achieve that once a year schedule.

Photo: ©2010 David W. Sumner

Celebrating What Counts

2010-04-22T08:24:00.000-07:00

5 months of chemo
5 blood transfusions
2 years of Rituxan therapy

I never stopped shooting.

Photo: Anna L. Conti

Watch and Wait

2009-12-14T17:43:00.000-08:00

David the nurse and David the patient give two thumbs up to the end of Dave's 2.5 years of treatment for B-cell chronic lymphocytic leukemia. (He'll be monitored every 3 months until he needs treatment again.)

Well, we just crossed into new territory today. Dave is officially on "Watch and Wait", which is a term used by people with Leukemia, to describe the state where the progress of the disease is being monitored, but not treated. Treatment will resume when Dave starts having unacceptable symptoms or dangerous blood levels.

It goes without saying that it's been a difficult 2.5 years since he was first diagnosed. But it was harder than I expected it to be. Seriously - I thought, since I've been through this kind of thing before with other family members and friends, that I was not going to have any major problems handling what needed to be done, and I think that part is true - with the help of friends and family, I stayed on track and was able to hold things together. What I didn't expect was the emotional toll. For the first year we were in a constant state of fear, uncertainty, and outright panic. But I had to ignore that and keep on keepin' on. After Dave's condition stabilized, and the situation became more routine, I went into a major depression, which I also pretty much ignored and didn't even recognize until about 8 months ago when I started coming out of it. (Note to friends: if you didn't hear from me for a couple of years, that's why.)

Things are going great now and we're living for today, focusing on what's really important to us, in ways that we couldn't imagine before this all came down.

Dave asked me to post this message from him:

"Today, after two and a half years of infusions, transfusions, injections, and countless bottles of pills, I had my last infusion of Rituxan. Now I begin what I hope will be a long period of "watch and wait." I will be having blood drawn every three months, followed by a visit with the hematologist-oncologist.

Right now my numbers are great and they have been that way for over a year. The question is how long will they remain "great" without the Rituxan therapy? Based on my history and my good response to treatment, I expect to hold good numbers beyond the standard five year estimate. New treatments are coming up fast, so I also expect it will be easier to keep the CLL in check in the future."

Almost done with Rituxan

2009-09-23T20:34:00.000-07:00

Dave's next-to-last Rituxan infusion was last week and it was uneventful. His bloodwork still looks good. He gets his last treatment in December and then he'll probably be on "watch and wait" status until he needs more treatment. The blood clots in his leg are still a problem, but relatively minor when you consider all the other stuff he's been through the last couple of years.

-- Posted From My iPod Touch

Quick Update

2009-08-10T20:45:00.000-07:00

Dave had an ultrasound of his leg today. The clot is still there (but we knew that.) He sees the oncology/hematologist on Wednesday, about the clot in his leg, and the CLL. More then.

-- Posted From My iPod Touch

Looking Forward to a June Vacation

2009-05-30T19:32:00.000-07:00

Next week I'm at Kaiser for a Rituxan infusion and some blood tests. That leaves one more infusion this year then a revaluation with the Doc. Next January we may decide to end the infusions all together and put me on a watch and wait status. I'm not too sure how I feel about that right now, but I'm confident we will keep things under control what ever we do.

So I'm focused on my photography and my up coming vacation. No trips this year. Staying close to home, spending some mornings out early shooting and hanging out in coffee houses.

All is well.

Keeping Busy

2009-03-29T15:57:00.001-07:00

CLL speaking, everything is going very well. My Rituxin infusions are down to four a year now. So I have two more this year and we will reassess in January. The idea of ending the Rituxin treatments is a bit scary right now, but if there is a chance of building a resistance to it over the long term, it would make more sense to save it for when the CLL cells start growing. We'll make those decisions when the time comes.

Anna and I have been keeping a hectic social calendar lately: museums and gallery shows, dinners, a lot of hanging out with the photographers and artists of the Blow-Up! group, family visits. You can check it all out on Facebook.

The photo above is from an evening at Noc Noc, on Haight Street. A bunch of Blow-Up! members got together to wish Bon Voyage to fellow member Tony Remington. Tony is in the Philippines working on a project on poverty and relief efforts.

Photo: ©2009 David W. Sumner

Caio for now.

Making Adjustments

2009-02-05T20:03:00.000-08:00

Shooting along Market and Stockton after a morning at Kaiser.
Photo: ©2009 Anna L. Conti

This month is the one year mark for my Rituxin maintenance and time to make a decision.

I have to say Dr. Liu is great . He listens, he answers any and all questions and is very detail oriented. He appreciated the fact that Anna and I have done some research and know a bit of what we are talking about.

The three of us talked about what we had learned from the recent ASH and LLS conferences and agreed that since there are no hard conclusions regarding a practice of Rituxin maintenance we had several options, any of which Dr. Liu would be comfortable with. So I pretty much decided to reduce the frequency of infusions and will now be going in for Rituxin every three months rather than every two months. At the end of the year we will reassess.

My numbers are really good and holding. There are several new drugs and monoclonal antibodies in test and trial right now. There's a good chance I'll be able to deal with my CLL as a manageable for a good long time.

Need I Say More?

2009-01-24T20:19:00.001-08:00

My Hematocrit is 41.2!

Baby It's Cold Outside

2008-12-27T20:17:00.001-08:00

Things are well. Anna and I were out Tuesday evening to hear Virginia Tichenor and Marty Eggers play at Pier 23, a funky little bar and seafood joint right on the pier. Virginia and Marty are fabulous ragtime musicians and good friends. They really had the place jumping the other evening. The photo above shows us riding the N Judah streetcar home.

I hope everyone is having a pleasant holiday and here's wishing you a Happy New Year.

2008-12-26T15:16:00.001-08:00

Kaiser Scores Some Points

2008-12-08T19:26:00.001-08:00

Anna and I spent the morning at Kaiser. I was scheduled for a Rituxin infusion at 9:15 am. We arrived early hoping to get things rolling so we could get out of there at a reasonable time. Anticipating the usual slow start, back up in the pharmacy and paperwork screw-ups, I was really surprised to be in a chair and sucking up monoclonal antibodies by 9:05. At 11:45 am we were heading out the door. Amazing! That was a first. I have to give all the nurses credit; regardless of all the chaos and goof ups, they are all caring and quick to correct any problem, and always conscious of the fact the patient has a life and wants to get on with it as soon as possible. Kaiser scored some points today, thanks Ellie.

Photo: ©2008 Anna Conti

chronic life

2008-10-10T04:31:00.000-07:00

Earlier this week we spent a day at the hospital, seeing Dave's doctor and then sitting in the infusion center while Dave got his Rituxan. There were minor problems, as usual, which turned a three hour process into an all day undertaking. It's been eight weeks since the last infusion and it will be eight weeks until the next one (in early December.) At the first of the year, we meet the doctor for a discussion of the next steps.

Dave's immune system is operating almost normally now, and his anemia has completely cleared up. The blood clot in his leg is still a problem, but not a major hindrance to daily activities. All in all, things are much better than I expected them to be at this point. Just being alive and well enough to enjoy the ordinary things seems like a windfall. And yet . . .

While chronic illness is preferable to acute fatal illness, it ain't no walk in the park. It seems churlish to bellyache about the rising costs of medication and treatment co-pays, minor (or major) side effects, hours in hospital waiting rooms, and so forth . . . when you consider the alternative. So we don't. Or we try not to. Unless we're with fellow travelers.

Pauline Chen, a transplant doctor, wrote an essay in the New York Times yesterday, about her struggle to understand why some of her patients resist or reject the post-transplant life. She talked with Amy Silverstein, who wrote “Sick Girl” (Grove Press, 2007.) Silverstein said, “There is a taboo in our culture against a sick person, post-transplant or otherwise, being honest about how difficult it is to live with serious illness and to live on the verge of death. These folks admit to feeling grateful and sad, joyous and angry, optimistic and defeated, all at the same time; yet only half of their emotions are acceptable in the public eye.”

Losing a Friend

2008-09-28T20:33:00.000-07:00

River of Mud by Jane Grossenbacher
©Jane Grossenbacher

A wonderful photographer and my dear friend for many years, Jane Grossenbacher, passed away Tuesday, September 16th. She had been fighting ovarian cancer for three years.

Jane inspired and motivated me to keep working during my own illness. We often passed each other coming from and going to our chemo treatments. She always greeted me with her beautiful, warm smile and an encouraging, hopeful hug.

Jane was a great artist and had a wonderful life.

A beautiful exhibit of her photography, mostly photogravures, opened September 12th at The Gallery on Potrero Avenue. If you have a chance, please stop by The Gallery and witness Jane's amazing work.

More info on the exhibit here:
http://baartquake.blogspot.com/2008/09/jane-grossenbacher-retrospective.html

The Gallery at 323 Potrero Avenue
(between 16th and 17th Streets, in San Francisco)
Open weekends 1pm - 5pm
Sept 12 - Oct 19, 2008

Minor Setback

2008-08-15T16:38:00.000-07:00

Today's ultrasound showed that the clot in Dave's left leg has grown a bit, down into the Popliteal vein, so he has to restart the Arixtra (anticoagulant) injections, and Coumadin pills, and every-few-days blood draws. Then get another ultrasound in six months.

The New Doctor

2008-08-07T11:15:00.000-07:00

Dave had his most recent Rituxan infusion yesterday. It was the first time we had a chance to meet with his new Hematology Oncologist, Dr. L. (Dave's previous doctor moved to Seattle in July.) We were pretty impressed with him - the new guy is very young, very personable, but best of all he communicates easily and openly, with specific facts.

I had given up hope of ever learning Dave's FISH results (a test of the genetic changes in the cancer cell.) Dr. L told us, before I even had a chance to ask, that Dave has the 13q deletion, which is very good news (it's a less aggressive form of CLL.)

Dr. L plans to continue Dave's Rituxan treatments through the end of this year. He's attending a Hematology/Oncology conference in December and he will meet with us after that to decide on Dave's treatment for the coming year.

Patience, Patience, Patience.

2008-07-29T08:27:00.000-07:00

Things are going well. It’s been a very busy summer with family visits and hosting several out of town friends. I’ve been walking a lot, which I love to do: taking stairs instead of escalators, finding interesting hill walks in the City.

I’ve stopped taking the anti-virals and antibiotics and next week I meet my new doctor for the first time. I have been suffering what I think is a bit of PTS. I have a twinge of fear when someone comes at me with a needle, where as before it was just a part of the regular routine, something I just did: sat calmly while a smiling face poked needles into my veins and pumped me full of toxic chemicals.

I had to visit the dentist earlier this month and I was terrified. As the chair tilted back I wanted to bolt out the door, and I have one of the best and nicest dentists in the world. I had a fractured tooth and we were going to try to put a crown on it, but in preparing the tooth it broke completely so he patched it up and scheduled me for an extraction. And again when I had the tooth pulled it was all I could do keep from bawling like a baby and screaming “Leave Me Alone!!!”

There are mood swings, I assume from the after-effects of the steroids and a year spent in survival mode. I now look forward to times of solitude, where before being alone was never very important to me. I have a dream of spending a month in a cabin on the coast, reading and writing and drinking tea in the early morning and taking long walks. I do realize that after about a week I’d be ready to return to the City and want to spend all my time photographing in the streets. But it’s a nice dream anyway.

It’s funny, I’ve always been impatient with people in general, but now even more so. I just don’t have time for nonsense. When I was a kid I knew my dad was not a smart person. I knew he was mean and irresponsible and I didn’t care for him at all and never gained any benefit from a relationship with him. But there was one time he said something to me that stuck. I don’t remember the exact situation, but one day we were in a wood shop and he said to me, “Can’t never could do anything.” I don’t know where that came from or where he heard it, I never asked. But it made sense to me, and today I think of that phrase often, especially when I’m at work and watching the people around me and when I hear adults complaining about this or that and acting the part of the victim. I just don’t have patience for it.

I suppose I’m just going through life changes, I turn 50 next month. I don’t mean to sound like the grumpy old curmudgeon that I am and I certainly do appreciate your patience with me. And just so you know, every morning, when I wake up, I tell my self, “I’m alive and it’s a new day.” I’m truly grateful for that. And if I can do that, anyone can.

-- Dave

Photo by: David W. Sumner

Back from Seattle

2008-06-25T18:57:00.000-07:00

On June 10th I saw Dr. Reddy at Kaiser and she was very pleased with my numbers. All remains normal. I will be stopping all oral medication at the end of the month and the next Rituxan infusion will be in August. It's working well and the latest news is there are several new monoclonal antibodies coming on the market that may prove to be even more affective than Rituxan. So all is looking well.

Anna and I got back from our vacation to Seattle a few days ago. Here's a brief look at the trip in pictures:

Stranded by MUNI at Church Street while on the way to AmTrak.

My nephew Dylan is quite the photographer. We spent a morning showing off our gear. After 22 hours on a train it was nice to spend some time with family.

The big event of the week was the high school graduation of my nephew Ethan (Dylan's brother). Anna caught me photographing Ethan as he negotiated dinner plans with his mother.

I got a shot of Anna with Dylan and Ethan. I can't tell you how proud Anna and I are of those very special young men.

Breakfast at Gilbert's with the family. I had never seen such a stack of hotcakes in my life.

Photographing Dylan's hockey practice.

A photo outing with the family on the Island. Our last day in Washington.

Until next time, stay well and be happy. - Dave

One Year Ago Today

2008-05-17T07:25:00.000-07:00

A year ago today I was diagnosed with Acute Leukemia. I had never met Dr. Reddy until that afternoon, my Primary Care Physician had made the appointment. Dr. Reddy said to confirm the diagnosis she would need a bone marrow biopsy. I would be admitted to the hospital in three days for three weeks of aggressive chemo therapy. I’d probably live six months, maybe a year. Dr Reddy took the bone marrow from my hip. Anna met me in the doctor’s office and listened to Dr. Reddy lay out the details. Our good friend Janet picked us up and we went home and spent the next 24 hours trying to come to terms with the idea that I was sick and dying.

On the afternoon of the 18th Dr. Reddy called, “Mr. Sumner, I have good news, your leukemia is chronic not acute. I have cancelled your admission to the hospital. We will start a different course of chemo therapy next week.”

The bone marrow biopsy showed I had CLL, a very serious but treatable blood cancer. Thanks to Dr. Reddy and a particular monoclonal antibody called Rituxan, today less than 5% of my blood cells are cancer cells. A year ago 80% of my blood cells were cancer cells.

Anna started this blog a year ago to help keep friends and family informed on my condition and progress. It also served as a learning tool and a sort of therapy for her. This past year was extremely hard on her. She gave up a great deal for me, she put her life on hold to help save mine. Thanks for giving her space and the time she needed.

I don’t intend to ever mention this anniversary again, it’s not a day to celebrate. I don’t celebrate pain and anguish. Since May 18th, 2007 I’ve celebrated each day, one at a time. And each day is better than the one before.

This blog will remain and be updated at least monthly. But if you wonder “How’s Dave doing?”, just tell yourself “He’s doing fine.” Because I am.

Approaching One Year

2008-04-30T19:57:00.000-07:00

It's been almost a year since I was diagnosed with CLL. Looking back it was pretty hellacious, but I continue to do well and my doctor is very, very pleased. She was very excited by the numbers from my last CBC. I'm out shooting a great deal and posting to Flickr. In fact I finally posted the Alcatraz essay to my Flickr page this past weekend. You can see it here.

Next month on the 17th I'm planning a special post here. I think I'll manage it, so stay tuned.

Thanks for staying in touch. - Dave

An Update From Dave

2008-04-04T10:38:00.000-07:00

Thanks for all the e-mail, calls and comments on the blogs.

Things are going well. Anna and I have been busy working and getting life back on an even track. Since ending chemo in September or October the side affects have diminished and I've recovered from the anemia. I have more energy than I've had in years. In the past few weekends I've taken long walks racking up 3 to 4 miles a day. It's hard to sit still these days.

The last biopsy, taken in January, indicated that the CLL was down to less than 5%. That's better than my Doc had hoped for. She would have been happy with 10%. But I figured why mess around ;-) The Rituxan therapy is easy, no side affects, just four hours with my feet up, once every two months. I'm hoping that the Rituxan and new therapies being tested will keep me in remission for a long time. Fingers crossed.

The blood clot in my leg is slowly reducing it's self. My leg still looks like a tree stump by the end of the day, but it could be worse. (This is unrelated to the CLL and due to years of living with badly injured knees.)

Generally I'm feeling great. I'm going to work at the Museum every day (actually I never stopped working...needed the health insurance), taking walks in the evenings, hikes on the weekends, and shooting a lot. So it's all good news.

If we don't post frequently that's only because little is changing right now. But we will try to post regularly without boring you to distraction. Send e-mail and leave comments. I'm always glad to hear from you and trade thoughts.

Dave

Maintenance Mode

2008-02-21T15:33:00.000-08:00

Dave had an infusion of Rituxan yesterday, and got his bloods drawn just prior to the infusion. So we didn't get the results until today. (The infusion went fine - he had a little sinus congestion, but nothing else.) His Hematocrit was down a bit, which has Dave a little worried, and disappointed.

Dave's leg is better than it was, but still nowhere near healed. And he's having a recurrence of the mysterious skin problems which seem to plague many CLL patients, and which every medical person dismisses.

Next appointment (for a doctor visit and blood tests) is about a month from now.

CLL Seminar in San Francisco

2008-02-02T21:14:00.000-08:00

Dave and I attended a seminar this morning at the Hilton in downtown San Francisco: "Emerging Therapies for Blood Cancer Patients." It was organized by the Leukemia & Lymphoma Society and sponsored by several drug companies. The seminar was for patients and their caregivers and it was free!

Before I get into the details about this event, I just want to say that I have been very impressed and thankful for the assistance we've received from the Leukemia & Lymphoma Society since Dave's diagnosis. We got a big package of materials from them, in the mail, just days after we heard the news (the hospital social worker sent Dave's name to them.) It was during that time when we were still reeling from the shock. Not only have they been better than average in terms of providing information, but they even offer financial assistance. They'll be on the top of my list of charitable donations forever.

This was my first time at one of these LL&S events, although I used to attend things like this when I was still working as a nurse. Based on those past experiences, I was expecting the usual coffee & donuts before the first speaker began, at 9:15am. Imagine my surprise at being seated in front of this:

It was a strange feeling to sit in a huge ballroom, filled with hundreds of people, and think, "Most of these people have Leukemia or Lymphoma." You'd see a couple, and try to guess which one was the patient and which one was the caregiver, and it wasn't possible.

Throughout the day, every doctor or nurse who spoke kept expressing their frustration with the current state of health care in this country.

One of the first presentations was a special award that was given to Dr. Ronald Levy - he's the guy who invented Rituxan. Dave got all choked up and said, "That's the guy who saved my life." (That's Dr. Levy at right.)

The keynote speaker was Dr. David Spiegel, (at left) who gave an inspirational talk on "Living With Uncertainty." His specialty is stress disorders and he had some practical advice about living with the sword of Damocles over your head. He had done a lot of work with breast cancer patients, so many of his slides used artwork from those patients and examples from their stories. After his talk was over, we were talking with the couple next to us (the husband had lymphoma) and she said that she had breast cancer, so it seemed like the talk was custom made for them.

For the disease-specific talks, they divided us up into several different rooms, each with our own specialist & topics. The CLL room was packed - the speaker was Dr. Steven Coutre, a CLL researcher. I could tell he was trying very hard to avoid technical language and speak ordinary English, but he was still talking way over the heads of many (if not most) of the people in the room. His talk was about the latest prognostic tests and newest therapies, meaning things that have been learned in the last year about CLL treatment. He had tons of charts and graphs and thank goodness he had all the slides on a handout that we could take home and study at our leisure.

The good news is that:
1. Some promising new therapies are coming down the pike.
2. Dave has been getting good standard-of-care therapies.
3. I still wish we knew more about Dave's gene and chromosome status, but it wouldn't really change his treatment at this point.
4. There was nothing presented at this seminar that I didn't already know. This made me feel pretty good, because it meant that I haven't missed anything major in my personal cram-course of study on CLL. (And I give most of the credit for that to Dr. Chaya Venkat at CLL Topics.)

There was a question-and-answer session after the talk and Dr. Coutre committed to answering every question, no matter how long it took, which I thought was wonderful of him. Sadly, a high percentage of the questions were things he could not answer, and they indicated (to me) that most patients are not as interested in the technical research info as in quality of life issues. People had a lot of questions about night sweats, joint paint, fatigue, alternative therapies, diet, cost of treatment, best CLL centers, familial links to immune diseases . . . I wrote a note on my evaluation suggesting that they get a nurse and/or peer group to hold a session on those topics next year.

Benefit Concert

2008-02-01T20:47:00.000-08:00

This just in - Dave's nephew is playing in this concert:

Please join us for a special night of entertainment, Saturday February 23rd at the Unity Theatre, North Bend, benefiting the Leukemia & Lymphoma Society. The evening will feature lots of dancing and music including the dark acoustic trio Ask Sophie, a couple of great punk rock bands Feed the Birds and Rumplesnakeskin, The Drummers and Dancers of Rogue Tribal, also Glory Daze playing classic metal/hard rock and much more...

There is a suggested donation of $5.00 at the door (but we don't want to turn anyone away). There will be food and drink available as well as a raffle and silent auction with too many items to mention (see the attached flyer) and all the proceeds will go to the Leukemia & Lymphoma Society. It should be a fun evening for a great cause, we hope to see you there!

Up and At 'em

2008-01-31T20:30:00.001-08:00

Dave has been feeling pretty good lately - his hematocrit is up to 41% this week! (That's a measure of the red blood cells - he's been low in red blood cells for at least a year, sometimes dangerously low.)

Dave had his bone marrow biopsy on Tuesday. The doc told us at that time, that based on his labwork alone, things looked good and she expected that the bone marrow biopsy would show the cancer cells in his marrow to be down to 10%. In which case, he could wait another two months before seeing her again. Today she called with the results from the biopsy. The cancer cells in Dave's bone marrow (which were 80% when he was diagnosed) are down to "less than 5%" now.

So the new plan is for Dave to get an infusion of Rituxan every two months, starting February 20th. Now, if only the DVT in his left leg would clear up, we could maybe go a week or more without visiting the hospital.

Knee Takes Front Stage

2008-01-16T19:44:00.000-08:00

Well, we didn't make it to the end of January before we had to make more trips to the hospital. Actually we didn't make it out of December. Right after Christmas, Dave was coming down the stairs and heard/felt a "pop" in his left knee. He had ruptured a Baker's Cyst, and his leg started swelling up. It didn't get better, and the symptoms are almost the same as deep vein thrombosis (DVT), so we got nervous and ended up spending New Year's eve at the hospital. They ruled out DVT and sent him home again, saying it would soon resolve on its own.

It didn't - it got worse. His leg got bigger, redder, and more painful, and today they did an ultrasound and diagnosed a DVT. So now he's on Warfarin (pills) and Fondaparinux (injections) and he's being followed by the "Blood Thinning Clinic." And he's pretty scared. I had a minor surgical procedure myself today, and I'm just putting one foot in front of the other.

Onward, into 2008.

(The Bone Marrow Biopsy is still scheduled for January 29th.)

The New Plan

2007-12-26T16:59:00.000-08:00

Well, we finally had a sit-down meeting with the doctor today. Dave was originally scheduled to receive his eighth infusion of Rituxan in the outpatient clinic today, but Monday's bloodwork showed an ominous drop in his Hematocrit, Neutrophils, Lymphocytes and Platelets. The Neutrophils were the most alarming - down to 228 in absolute numbers. As soon as the results came (via automatic email from the Lab) yesterday afternoon, Dave became agitated and by evening he was having a real meltdown. We hadn't heard from the doctor in three weeks, in spite of Dave's repeated emails and phone calls expressing his concern and asking to for more information (like, what's going on and what's the plan?) Dave was scheduled to meet with the doctor today, after the Rituxan infusion, so we figured our questions would have to wait until then.

This morning, as we were getting dressed to go to the hospital, Dave got a call from the clinic saying that there had been a change of plans. He was supposed to come in earlier, to get a Bone Marrow Biopsy, then meet with the doctor, and then the Rituxan infusion, maybe - the doctor would discuss it with him. Dave had been relentlessly mulling over the possible scenarios for the last 24 hours, and this just added to the speculation. But as we wolfed down some breakfast, Dave concluded that the doctor was sure to cancel the Rituxan infusion, so he decided we didn't need to pack any lunches for the day. He was nervous about the Bone Marrow Biopsy, but figured it was for the best, because then maybe the doctor would tell us something and at least he wouldn't have to sit in the infusion chair for 3 hours, getting Rituxan.

When we got to the Oncology Clinic, we didn't have to wait long, and Dave was called in soon after we arrived. But instead of taking him to the procedure room (where they do the biopsies) we were ushered into the doctor's exam room. We waited there a long time (or it seemed that way to us.) When the doctor came in, she asked him how he's been doing since she saw him last month - he's actually been feeling pretty good, and the only changes have been some mild night sweats during the last few days. Then Dave asked her what was going on with his dropping blood counts and she said that the bone marrow was depressed and that she didn't really know why. It could be the Rituxan, but maybe not. She had changed her mind and decided against the Bone Marrow Biopsy because it wouldn't really show much, with his marrow so depressed. But she wanted to go ahead with the Rituxan infusion for today. Dave wanted to know why. She said she wanted to go after those last few cancers cells lurking around in his body. Dave said he was worried about the Neutrophils going down. She said she was worried about it too, in fact everyone at the clinic was worried about him. I wanted to know how much lower Dave's counts could safely go. At that point, she said that he didn't have to have the Rituxan if he didn't want to - it was up to him. She said it could go either way, and she would be OK with whichever he decided. He asked her again about the Rituxan and what it was doing. Then he looked at me. I agreed that it was tempting to want to get those last cancer cells, but I also was concerned about his Neutropenia - I told him it was his decision. He said that he wanted to skip the Rituxan for today (later he told me that he had already made up his mind that he didn't want any more Rituxan and that he was relieved that she made it easy for him to refuse it.)

When she asked if we had any more questions, I wanted to know how we could get in touch with her. She gave us a new phone number - her case manager - and told us to call that number when we had questions.

The latest new plan: Give Dave's bone marrow a "rest." Check it with a bone marrow biopsy at the end of January. No more weekly blood draws - check it in two weeks, mainly to make sure the Hematocrit isn't falling too fast. Keep taking infection-avoidance precautions.

Onward

2007-12-19T11:56:00.000-08:00

Dave's treatment continues . . . Rituxan infusions, weekly - he's getting infusion #3(of 6) as we speak. Plus he had 4 infusions in the months prior, for a total of 7 Rituxan infusions, so far. Neutrophils are improving slightly, but still waaaaaaay too low. He's feeling pretty good, in spite of everything. The doctor still has not responded to Dave's request for information.

Keeping it simple

2007-12-12T13:21:00.000-08:00

Dave was scheduled for more Rituxan today, but he didn't go in for it. His Absolute Neutrophil count is 225 (last week was 429) and his Absolute Lymphocyte count is 630 (last week was 605.) He left messages for his doctor yesterday morning and again this morning expressing concern about his low white counts, but no one returned his calls. He also called the Oncology Clinic this morning and left a message saying he didn't want more treatment until he'd talked to someone. But we didn't hear anything until someone called to ask why he wasn't at his appointment.

A that point, the explanations given for his low white counts were, "don't know" and "it's the disease process." Nevertheless, Dave was strongly encouraged to come in for another Rituxan treatment, because "the doctor wants you to have it" and "it will help cure the disease and then the Neutrophils will recover." Right. This kind of vague, bullshit, baby-talk drives me absolutely nuts. It's taking all of my self control right now to not turn into a raving bitch.

Deep breath.

So now, we're headed back to the hospital tomorrow for another Rituxan treatment. Stay tuned.

Mystery of the Disappearing White Cells

2007-12-05T16:13:00.000-08:00

Well, Dave had his Rituxin today, even though his White Blood Count was still down, and in fact seems to be dropping for some mysterious reason. I scoured the internet and asked friends in the medical field ('tho not anyone in the CLL specialty) and I wasn't able to come up with any explanations. I asked Dave's doctor today, and she said, "I can't explain it."

His Neutrophils and Platelets both took big hits this past week (his absolute Neutrophil count is only 429, platelets down about 20 per cent but still normal at 169.) The Lymphocytes are down slightly, to 605. This is in spite of the fact that he has had no Fludarabine since September 19th and he hasn't had Rituxin since November 7th.

Strangely, his Red Blood Cells are improving - his Hematocrit is up to 28.5, so it's not like his bone marrow is giving up the ghost.

His doctor wants to go ahead with the next round of Rituxan, which means he'll be going in once a week for the next 6 weeks for more infusions. And they said to stop the Prednisone (he's only been getting 15mg/week for the last few weeks.)

He's still getting his blood drawn every week, so we await next week's results with some anxiety . . . or at least, I do (I hate not knowing what's going on.) Dave is confident that things are going just fine.

CLL Drug Legislation

2007-11-28T12:48:00.000-08:00

This is from Chaya Venkat of CLL Topics:

We have written before on the potential value of radioimmunotherapy (RIT) drugs such as Bexxar and Zevalin to CLL patients. In fact, we are monitoring with interest an important trial at the Hutchinson Cancer Center (Seattle) using Bexxar for MRD clearance in CLL patients. Here are links to our previous articles, for your quick reference:

Radioimmunotherapy is Underappreciated
Reimbursement cuts may sink RIT
Bexxar trial for CLL

With recent rulings by Medicare, we are in imminent danger of losing access to both of these drugs. Our sister organization www.lymphomation.org and its founder Karl Schwartz have been very active in trying to mobilize patient support for these two important drugs, and today is the day to make a couple of phone calls to your government representatives on this subject. I strongly urge you to support this initiative, and add your voice to the other patients trying to keep these therapy options for all of us. Please call Senator Max Baucus, as well as the senator from your state. The contact information is given below for your convenience. What should you say to these senators? Something along these lines, with as much gusto as you can muster:

“I am a cancer patient/caregiver and I'm calling about the CMS RULING that will cut reimbursement and therefore DENY ACCESS to potentially life saving radioimmunotherapy drugs Bexxar and Zevalin ... Please do what you can to fix this ruling before the end of the year. ....”

Senator Max Baucus (Montana) *
511 Hart Senate Office Bldg.
Washington, D.C. 20510
(202) 224-2651
(202) 224-0515 (Fax)
webmail: http://baucus.senate.gov/contact/emailForm.cfm?subj=issue

Majority Members

John D. "Jay"Rockerfeller IV (D-WV)
Jocelyn Moore: 202-224-6472

Kent Conrad (D-ND)
Lindsey Henjum: 202-224-2043

Jeff Bingaman (D-NM)
Frederick Isasi: 202-224-5521

John F. Kerry (D-MA)
Chris Dawe: 202-224-2742

Blanche Lincoln (D-AR)
Ashley Ridlon: 202-224-4843

Ron Wyden (D-OR)
Nicole Tapay: 202-224-5244

Chuck Schumer (D-NY)
Meghan Taira: 202-224-6542

Debbie Stabenow (D-MI)
Oliver Kim: 202-224-4822

Maria Cantwell (D-WA)
Dale Chung: 202-224-3441

Ken Salazar (D-CO)
Piper Su: 202-224-5852

Minority Members

Orrin Hatch ( R-UT)
Pattie L. DeLoatche : 202-224-6306

Trent Lott (R-MS)
Emily Chandler: 202-224-6253

Olympia J. Snowe (R-ME)
Bill Pewen: 202-224-5344

Jon Kyl (R-AZ)
Jennifer romans: 202-224-4521

Gordon H. Smith (R-OR)
Lindsay Morris: 202-228-5862

Jim Bunning (R-KY)
Holly Santry: 202-224-4343

Mike Crapo (R-ID)
Katie Oppenheim: 202-224-6142

Pat Roberts (R-KS)
Jennifer Swenson: 202-224-4774

John Ensign (R-NV)
Andrew Shaw: 202-224-6244

A Small Victory

2007-11-14T12:46:00.000-08:00

"I think we should just declare victory and be done with the Fludarabine," is what the doctor said this morning. Dave's white blood cell counts were (once again) too low for chemo, even too low for Rituxan. It's been almost two months since he had his last (fifth) round of Fludarabine. Since that time, he's had a severe bout with Autoimmune Hemolytic Anemia, but that seems to have slowed, maybe stopped - the doc thinks it was the Rituxan that put the brakes on the anemia (plus wiped out a good chunk of white blood cells.)

So the new plan is to continue with the weekly blood tests and plan to give him Rituxan now and then, when his blood levels allow it. She didn't actually say, "now and then" - she proposed some complicated schedule that I didn't bother to write down because I'm 99 percent certain that it'll change before we get to it. The bottom line is that, unless some unexpected disaster happens in the next few weeks, Dave will get his next dose of Rituxan on December 5th. It could take months for his red blood cells to get near normal.

But he has an amazing capacity for adapting to the anemia. When we were in Los Angeles recently, he walked all over town with me, including up the steps at Angel's Flight (that's him, above, watching the parrots half-way up the hill.) We both took a lot of photos in L.A. Mine are up on my Flickr page now; Dave is still scanning his film and will probably post something later today. Dave's also writing for the new group blog, Bay Area Artquake!

I probably won't be updating this spot until Dave's next treatment (December 5th.) Meanwhile you can keep up with us at our usual spots:

Dave's Photo Blog
Dave's Flickr Page
Anna's Art Blog
Anna's Flickr Page

So Far, So Good

2007-11-06T05:43:00.001-08:00

Dave seems to be holding on to his red blood cells this week. He feels pretty decent, and his Hematocrit yesterday was 24 - he hasn't been that high since July! If he ever gets up to normal (40 to 50) he's going to feel like Superman.

So we're going ahead with the Los Angeles trip - see you next week.

Halloween at the Clinic

2007-10-31T17:40:00.000-07:00

Dave & I were standing at the corner of 9th & Judah this morning, waiting for a bus to the hospital, when I looked over and saw . . . I wasn't sure what it was at first . . . a view through an apartment window, of a TV screen so enormous a small section of it filled the window. Expanded entertainment with the morning commute.

Anyway, it was the usual whole day in the infusion clinic. Dave got blood and Rituxan, tolerated them both with no problems, but the Benadryl (pre-med) has him pretty zonked out.

Plans for the immediate future: Reduce the Prednisone even more. Check the Hematocrit again in a week, get more blood then if necessary. Try again in two weeks to get the Fludarabine & Mitoxantrone.

No one at the hospital has anything useful to say about Dave's skin problems. We're figuring it out on our own.

Be careful out there tonight!

New Plan

2007-10-30T12:24:00.000-07:00

Dave's blood work from yesterday showed that his anemia is coming back - of course we knew that (the shortness of breath, the dizziness, the pounding heart.) And the blood test showed a slight increase in his Neutrophils and Lymphocytes. But the White Blood Cell count is still on the low side - 1.9 K/uL.

So the doc has decided to postpone the Fludarabine and Mitoxantrone again. Dave is scheduled to get another infusion of Rituxan (which so far he's tolerated very well) tomorrow. He's also going to get another blood transfusion, but we're not sure if it will be tomorrow or later in the week.

Then there's the skin problem - Dave's been dealing with an annoying acne-like rash for weeks, and after much trial and error, we think it may be a fungal infection. Luckily, you can find over-the-counter remedies for that, but maybe someone at the infusion clinic tomorrow will have a better idea.

Postponed Again

2007-10-23T12:28:00.000-07:00

Dave's doctor told him today that she wants to postpone the sixth (and final) infusion of Fludarabine once again. She said his white count was still too low.

I was happy to hear the news, since a.) the Fludarabine does very nasty things to Dave while it's killing those cancer cells, and b.) he's still not completely recovered from the last dose (which was mid-September.) Plus, in looking at his bloodwork this morning, I thought I could see a glimmer of hope that maybe his bone marrow was starting to recover.

But Dave saw it differently and took the news pretty hard. He's been dreading this last dose, because of how sick it made him the last time, and he just wants it to be over with. Every week that it gets postponed, the apprehension increases.

So we're going out for Mexican food tonight. It's been months since Dave could tolerate his favorite foods (the chemo strips his stomach lining so things like tomatoes and hot peppers hurt too much to eat, plus he can't taste much.) Now it's been long enough, since that last chemo, that he figures he can try some tamales. So we're going to L'Avenida.

(Image is a plate of tamales and nopales tunas, made here at home a while back.)

Seach engine for CLL

2007-10-22T07:52:00.000-07:00

I just found this cool new variation on Google, called Cllgle, which was configured by Andy Nathan in the UK. It's a way to search prominent CLL & medical sites for information without getting billions of nonsense responses from the rest of the internet.

Here's the LINK. I also put it in the sidebar for future use.

Waiting

2007-10-16T11:52:00.000-07:00

Dave has been hoping this would be his last regularly scheduled week of chemo, but it's been postponed, due to low neutrophil counts. The doc also said that the Fludarabine has not been working as well as she'd hoped, but that it was doing 70% of the job. The new plan is to do one last round with Fludarabine next week, then continue with Rituxan for an undetermined number of months. He might need another transfusion before the Fludarabine - we'll find next Monday when he gets his blood drawn again.

We asked about the upcoming trip to Los Angeles, which Dave has really been looking forward to. . . it's only three weeks away. She said he could come in for another transfusion right before we left, so that he he'll have enough energy to leave the hotel room.

But first he has to get past the next chemo session and its aftermath, which could be rough. We'll just have to wait and see how it goes. He's been having some gastric problems, so she ordered a new drug - Pepcid. And she reduced his Prednisone again.

Holding Steady

2007-10-10T07:49:00.000-07:00

That last transfusion seems to holding steady, as least as far as the symptoms are concerned. Dave went back to work yesterday, and today he's getting another blood draw on his way home, just to make sure things are copacetic.

(Image above - as soon as Dave felt well enough to walk around, he headed out to the Inner Sunset to get his film developed, and shoot more pictures.)

Three Days of Rest

2007-10-05T14:57:00.000-07:00

Well, we're back from the hospital - Dave got two more units of blood. I asked his nurse if she thought this might get his hematocrit over 20, and she said, "maybe." Now he has three days to rest up, with an anticipated return to work on Tuesday. A friend loaned him a sack full of movie DVDs and we were home less than 10 minutes when he had "The Magnificent Seven" playing. So Dave's set for the weekend. I'll be at the Bluegrass Festival - actually I'm thinking of riding my bike over there now. . .

Love Those Red Blood Cells

2007-10-04T19:52:00.000-07:00

Jeeze, it's been a tough week, but things are looking a little brighter this evening.

Dave was still pretty weak this morning. I did a few "tests" with him: checking his pulse before & after certain activities to see if his cardiac recovery time was adequate - and it was, although his resting rate is still significantly elevated, compared to a few months ago. And he tried walking four blocks to see if he could tolerate it - which he could, but just barely. He was out of bed all day, which is an improvement, but he's still very pale and his lips are blue.

We contacted his doctor and they had him come in for another blood draw. And shortly after the blood draw, we got a call from the clinic telling him to come in tomorrow morning for more blood.

The best news is the lab results from today:
WBC 0.5 (about the same)
RBC 1.84
Hgb 6.2
Hct 17.8 (better, but not good enough)
Platelets 110 (low, but much better - I had told him that "Anna's Rule" is that he could not ride public transportation with a platelet count under 100)
Neutrophils 23% (wow! way better!)
Lymphocytes 76% (lower than before)

Anyway, we have a ride to the clinic set up for tomorrow morning, so by Saturday he should be feeling a lot better.

Remember Burma

2007-10-04T08:59:00.001-07:00

Detained pro-democracy leader, Aung San Suu Kyi, appeared at her front gate yesterday as several hundred courageous monks marched through barricades blocking access to her home in Rangoon.

LINKS:

Chevron and Burma

Photos from a "brave Burmese living in Rangoon," who cannot be identified right now.

What's the Story with Burma?

BBC Profile of Burma

New York Times on Burma

Huffington Post on Burma

Independent Media looks at Burma

US Campaign for Burma

Human Rights Watch on Burma

Democracy Now on Burma

Amnesty International on Burma

Treating the Symptoms

2007-10-03T08:56:00.000-07:00

Yesterday (Tuesday) was exhausting (for both of us.) A nurse at the infusion clinic called at 8:30am and told Dave to come down right away for some blood. We were both up, dressed, done with breakfast, and waiting for the call. But due to transportation problems, we didn't get there until 10:30am. Which means, the blood didn't actually get started until nearly noon. Which means, it didn't finish until almost 3pm. Which means, we got home about 4pm (later for me, since I had some errands to finish.)

Dave was so weak, he was barely upright. When the infusion nurse saw him, she said, "Hmm, you do look a bit pasty - do you need to lay down?" Luckily, he was able to spend most of the day in a soft chair with his head back and his feet elevated, dozing off & on. After he got settled at the infusion clinic, I took off to look for soft bland foods that would not hurt his mouth or stomach but would provide him with some electrolytes and protein. Plus it had to be low fat, and vegan. And I had to find some pain meds and other odds & ends, from several different sources. It was a challenge, but I think we're stocked up pretty well, now.

Dave is finally reaching the threshold of his needle-stick tolerance. He's been stuck 15 to 18 times per month for the last 6 months and at least 3 of those times each month he gets IV chemo through that vein. He's had more hematomas on his arms than we can count, and the pain is getting worse. He's starting to have nightmares about needlesticks.

He's spending today in bed. He's still weak, lethargic, and got a killer headache. He actually looks feverish, but he doesn't have a fever. He might have a sinus infection. He might be having a mild blood reaction. It's hard to tell what's going on - with a trashed immune system, the usual signs don't apply. So for now, we're just treating the symptoms.

Well, that answers that question

2007-10-01T19:53:00.000-07:00

We finally got the lab results back from this morning's blood draw, and it's:
RBC 1.47
Hgb 5.0
Hct 14.5
Platelets 58
WBC 0.5
Neut 7%
Lymph 92%

. . . so I assume we'll be heading to the hospital tomorrow for some more transfusions.

AIHA and Chemo

2007-10-01T16:24:00.000-07:00

... not a happy combo. Dave's been up, down, and all around since my last post. At the moment, he's feeling pretty miserable. His mouth is full of ulcers (probably from the chemo,) he's having stomach/abdominal distress (of unknown origin,) he's having tremors and cramps (electrolyte imbalance, due to multiple issues) and he's weak & breathless. I'm guessing his Hematocrit is lower than it's ever been (the lowest so far was 18.)

I took him to the hospital for a blood draw this morning, and we left a message for the doc this afternoon, but we haven't heard anything yet. We're both assuming he'll get another transfusion tomorrow, but we're still waiting for the word . . .

Good News

2007-09-18T18:26:00.000-07:00

Sun coming up, under the fog - 41st & Judah at 7am.

The doctor gave us some good news today. Dave's hematocrit is 24 - first time it's been over 20 in about 5 weeks. It's not dropping as fast as it was a few weeks ago. Also, his white count is not rising as fast, between chemo infusions, as it was a few months ago. And he gained 2 pounds this time, instead of losing (he's lost 35 pounds since this thing began.) So the doc feels like we're making progress against the CLL and the AHA.

She's dropping the dose on the Prednisone (from 40 to 20 mg a day.) He'll continue with his previously scheduled infusions of Fludarabine, Mitoxantrone and Rituxan this month and next month. We'd never discussed treatment beyond that point, but Dave has been hoping for a remission (and no more treatment) at the end of six months. So when Dave asked her what happens after next month's infusion, and she said she wanted to continue the Rituxan, and weekly blood counts, I thought he was going to be disappointed. Especially when he asked her, "For how long?" and she said for 2 years!

As we were leaving the hospital, I asked him if he was OK with continuing the Rituxan infusions for 2 years, and he said, "Fuck, YEAH, I'm OK with that - it means she thinks I'm going to live for two years!"

More Blood

2007-09-16T15:40:00.001-07:00

Dave had another transfusion on Friday (two units of Packed Red Blood Cells.) This is his second transfusion and it was much easier for him. He still hates the Benadryl they give before the infusion, because it makes him feel groggy for the rest of the day. And he's not too crazy about spending hours sitting in the infusion clinic, hooked up to an IV. But otherwise, it's not too bad. We had a great weekend - went out to eat three days in a row, and did a little walking on Saturday & Sunday. Now the big question is, how long will this boost last?

Dave's Hematocrit didn't drop quite as fast, this last week, as it did during the previous few weeks. But he's taking a lot of steroids, and he's starting to get hand tremors, so he's hoping to cut back on the Prednisone as soon as possible. Mostly he's annoyed about the fact that the tremors affect his shooting - he used to be rock-steady at really slow shutter speeds and he rarely used tripods. Now's he's having to make adjustments.

This upcoming week is Chemo Week #5. We see the doctor on Tuesday (more bloodwork on Monday) so we're hoping for a serious evaluation of Dave's condition and response to treatment.

New CLL Info

2007-09-10T14:41:00.000-07:00

Thanks to Chaya Venkat's excellent advocacy, four CLL experts have posted answers to her questions about stem cell transplants as treatment/cure for CLL. It's too soon for Dave to be pursuing this option, but not too soon to be thinking about & planning for it. Although whenever I mention it to him, he dismisses it with, "They almost never work."

Regarding the question of outcome for this procedure, Dr. Andrew Pettitt wrote:

There are essentially three possible outcomes following allografting: (1) the disease is cured; (2) the disease is not cured but the patient survives the procedure; and (3) the procedure itself is fatal. It is always difficult to assign each of these outcomes with a precise probability value. However, taking an ‘average’ CLL patient (of course there is no such thing) who is in a reasonable remission (whatever this means), I find it helpful to think in terms of a ‘rule of fifths’, i.e. there is a 3-in-5 chance of the transplant working, a 1-in-5 chance of the disease relapsing, and a 1-in-5 chance of the transplant shortening the patient’s life due to complications. These figures are only crude approximations of the available data but nevertheless give patients and their families something simple and tangible to chew over. ... Another extremely important issue to be factored into the equation is that, irrespective of the final outcome, the procedure is very likely to have a negative impact on quality of life for a year or more owing to frequent hospital attendances and the problems associated with graft-versus-host disease (GVHD) and infection.

And Dr. Terry Hamblin wrote:

What makes CLL so much worse than other conditions for which mini-allografts are performed is how immunosuppressed the patients are before the transplant. Patients with CLL are immunodeficient from the start in a way that patients with say, MDS are not. Fludarabine, (the drug that that Dave has been getting - Anna) is extremely immunosuppressive, producing AIDS-like levels of CD4+ cells for around 2 years. If the patient has been previously exposed to CMV or EBV (which Dave has - Anna) the reactivation of one of these herpes viruses is on the cards. Most guidelines have suggested that allografting should be reserved for patients refractory to fludarabine containing regimens or those who relapse within one year. This seemed like good advice at the time, since the risks of transplant in CLL are so great that one would not want to expose a patient to them if there was a reasonable chance of prolonged good quality life on immunochemotherapy alone. Remember that before mini-allo's, allografts in CLL carried a treatment related mortality of 40%. It had been hoped that mini-allo's would reduce this, but on what has been revealed so far, this has not been the case.

I Guess It was Inevitable

2007-09-10T11:10:00.000-07:00

I've still got fading symptoms of a mild flu, but in spite of my efforts not to spread it to Dave, I think he's coming down with it now. He's also suffering from mouth ulcers and mild digestive problems . . . otherwise, things are OK around here.

He's scheduled for more labwork tomorrow and another round of chemo next week.

Go Figure

2007-09-04T19:21:00.000-07:00

Dave was at the hospital today, getting a follow-up blood test, to see how many of those new red blood cells are still hanging around. He's not as pale or short of breath, as he was before the transfusion, but he is having significant fatigue. So we're curious to see what the bloodwork shows (we'll know tomorrow, maybe.)

While we were there, he also tried to fill another prescription for Famciclovir. Remember the problem he had last time? Different aggravation this time. I'll let Dave explain it to you:

If It ain't one thing, it's another.

2007-08-30T08:11:00.000-07:00

Dave's transfusion went well - no reactions. He actually has a little color in his face and he goes up the stairs at a pretty good clip, with no shortness of breath.

On the other hand . . .

Last night we spent three hours in the SF General Emergency department. Got home about 1am. This time I was the patient. I've been sick for a few days, but Dave was afraid I was getting pneumonia or worse (turned out to be just a garden-variety upper respiratory infection.) When I was getting ready to go to bed for the night, he suddenly became alarmed and called our friend Pam to drive us to the hospital. I haven't been this sick in about 8 or 10 years, but I figured it was just a cold or the flu. Normally I wouldn't have gone to the ER for something like this but I could see that he was terrified and he was likely to stay up all night hovering over me. He relaxed after he heard a couple of doctors say it wasn't pneumonia or a heart attack. While we were waiting for my discharge papers, he looked around and said with a smile, "Steve McQueen was here." (Actually Bullitt was filmed in the older wing.)

So now he's headed off to work, a little late today. I'm in "quarantine," sleeping on the daybed in the studio, so that I don't pass this bug along to the rest of the household.

Weirdly, this trip to SF General happened on a day when the local paper ran a column about how people manage without health insurance. They included a quote from me about using the free clinics and SF General. The waiting rooms at General can be a trial, but I've always had excellent care there. I feel really lucky to be living in San Francisco, with top-notch medical centers and plenty of options for the uninsured.

(Image at top is a view of the Bullitt-era SF General. via)

Short Update

2007-08-28T09:06:00.000-07:00

Dave is at the hospital now, getting a couple of units of blood. (His Hematocrit was down to 17 yesterday.) I'm here at home, with the flu, or something like it. He was pretty nervous about getting this transfusion and wanted me to sit with him while he got it, but not only am I feeling really lousy, but I was worried about infecting him and other patients in the infusion clinic. A friend dropped him off at the hospital this morning. His ride home is not firmed up yet, but something will work out. He did amazingly well with so few red blood cells, so I expect him to be feeling great when gets home this afternoon. More later . . .

First Round Done

2007-08-23T16:48:00.000-07:00

Other than complete exhaustion, there were no problems with Dave's first infusion of Rituxan. He gets more Fludarabine tomorrow and then next week, if his Hematocrit isn't up to 20, he'll get a transfusion.

Time to Start Rituxan

2007-08-22T15:31:00.000-07:00

Dave, heading into Star Photo (616 Irving; 415-681-2445) to get his film developed. He stops by so often, he's on a first name basis with all the guys in there. He's still shooting up a storm, in spite of an anemia so severe that he gets light-headed if he stands up too quickly.

This was a long day at the clinic. As I suspected, his bloodwork yesterday was not good. The anemia was the worst it's ever been. On the other hand, his platelets and lymphs were slightly improved (not nearly enough, but at least they didn't get any worse.)

So it looks like he's stuck with Prednisone therapy for the foreseeable future (to slow the destruction of his red blood cells.) He's starting to get some muscle-wasting, but none of the other nasty side effects have surfaced.

After three months of Chemo, the Fludarabine/Mitoxantrone is really kicking his bone marrow but it's not doing a whole lot to the cancerous lymphocytes, so the new plan is to add Rituxan. Rituxan is a monoclonal antibody which specifically targets mature B Lymphocytes (as opposed to ordinary chemo which kills a lot of "innocent bystander" cells.) This is good news, in my opinion - I was hoping they would try Rituxan soon. But of course, Rituxan has its own sticky wickets, and the first one comes up tomorrow when Dave gets his first dose of Rituxan.

The infusion will take 6 hours (they told him to "pack a lunch.") Rituxan causes fairly serious allergic reactions in a lot of people, so Dave may need to be treated for that. Plus, the Rituxan is expected to kill the lymphocytes pretty quickly and when the dead lymphs start spilling toxins into his bloodstream, he'll be at risk for Tumor Lysis Syndrome.

Once he gets through the first dose, he'll be scheduled for repeat doses once a month, and then every 6 weeks or so, for . . . awhile (not sure how long - no point getting fixated on a long-term schedule, these days.)

But, back to the anemia. Next week Dave is scheduled for a blood transfusion - unless his RBCs manage to rally between now and then.

Blood work today:

WBC - 7.2
RBC - 1.57
Hemaglobin - 6.4
Hematocrit - 18.8
MCV - 120
Platelets - 139
Seg Neuts - 1%
Lymphs - 88%

Auto Immune Hemolytic Anemia

2007-08-21T10:47:00.000-07:00

AIHA is the current problem - in addition to the CLL, of course. Dave has had some ups and downs the last few weeks, and he's due to start Chemo again tomorrow. But I'm not convinced that his blood counts are adequate (that he can withstand a round of chemo.) The doctor has been increasing his Prednisone, but based on his appearance, I have a feeling his counts are down again. He had more blood drawn this morning, so tomorrow morning, when we meet with the doctor, we'll know for sure.

Last week's blood work:
WBC - 3.5
RBC - 1.64
Hemaglobin - 6.8
Hematocrit - 20.3
MCV - 124
Platelets - 78
Seg Neuts - 3%
Lymphs - 97%

More About Fatigue

2007-08-02T19:29:00.000-07:00

(Dave has been feeling better the last couple of days, and his blood work is improving, too. In fact, he says he's got more energy now than at any time since his diagnosis. )

Chris Dwyer, of CLL Canada wrote this about CLL-related fatigue:

While my life changed drastically after my diagnosis, I did not think I would spend the next four years fighting in court to get disability payments from my government's 'safety net'. A battle I finally lost, due to an "old school" oncologist's statement that the severe fatigue I was experiencing was not linked in any way to CLL. In fact he considered me to be asymptomatic.

Sometime later I took him to task to explain his position and after some excuses he backed down from his position and conceded there may be a link between fatigue and CLL. However the damage had been done in my case.

Later that year, I received a letter from Dr. Michael Keating, a leading CLL researcher at M.D. Anderson, as part of my court appeal. He concluded that CLL fatigue was certainly real for some CLL patients. But it is not fatigue like being tired. Rather the good B-cells in some patients sense that there are immature and malformed B-cells floating around and they set off an alarm to trigger the body's defence mechanisms. Remember how you felt the last time you had the flu or a bad cold? Tired and achy and just wanting to go to bed. Well for some of us with CLL we are 'stuck' in this condition. Finally we have a definite mechanism to explain why some CLL patients suffered from this mind numbing fatigue.

Strange News

2007-07-31T10:44:00.000-07:00

I just got word that my first husband died last week. His obit:

Mr.Rodney S. Hill, 57, of Anderson, SC, formerly of Dover, DE., died Tuesday, July, 17th at the M.D. Anderson Cancer Center in Houston, Texas. Mr. Hill lost a long and courageous battle with leukemia with his family and best friend Robert Van De Visser of Denton, Maryland by his side. He was a 1967 graduate of Dover High School and served six years in the U.S. Army Reserves. He was a 1977 graduate of Delaware State University and former Chief of Right of Way of the Delaware Department of Transportation. Mr. Hill most recently retired from Earth Tech Consulting, Inc, where he served as a Program Manager. He was son of the late Rodney S. Hill, Sr., and is survived by his mother, Daisy Hill of Dover, Delaware; his wife of thirty-four years, Barbara; his sons Brian and Blair; his daughter-in-law Jessica; his beloved grandchildren Savanna, Carson, Chase, and Alli; and his brother Rick of Dover, Delaware. His family will hold a private service to celebrate his life. In lieu of flowers the family asks that memorials be sent to The Leukemia and Lymphoma Society, 1247 Lake Murray Blvd, Irmo, SC 29063.

Why Are You So Tired?

2007-07-29T18:44:00.000-07:00

How tired can you be? Let me count the ways. I've been paying more attention to this topic lately.

1. Too Many White Blood Cells (aka leukocytosis) - A deep, cosmic fatique. Sleep is more attractive than sex, food, or any kind of entertainment. Night sweats sometimes interrupt that sleep. Which means extra laundry in the morning.

2. Not Enough Red Blood Cells (aka anemia) - You feel like you're wearing lead boots. The smallest muscle twitch is a workout that makes you breathe hard while your heart pounds. Digesting your dinner is hard work. Taking a shower can seem like an Iron Man triathlon. You're exhausted, but not really sleepy, and anyway sleep is difficult, due to the freight train in your ears (sound of your heart pumping harder to get the few remaining cells to circulate a little more.)

3. Your Body Is A Superfund Site (aka chemotherapy/radiation) - When the nurse tells you to protect the rest of your household from your bodily fluids, which are now carcinogenic - you gotta wonder . . . Everything tastes weird, smells weird, and feels weird. It's purple haze time.

4. If This Is Tuesday, This Must Be the Infusion Clinic (aka not enough hours in the day) - suddenly you have a calendar more complicated than a celebrity's, with 8 to 12 new drugs, all on different schedules; appointments with doctors, therapists, labs, clinics, and sometimes lawyers, banks, and insurance representatives.

5. Thinking Hurts. Can I Stop Now? (aka too much new information) - Like cramming for a test, in a foreign country, in a language you don't know, under a deadline you're not sure of, and if you flunk the test - the penalty is great bodily harm, or death. Just zoning out is a great, but feared, temptation.

6. I Don't Like this Cancer Game, Can I Go Home Now? (aka depression) - A zombie takes over your body. It just wants to sleep, when possible, or simply stare at the ceiling, while you remember the life you used to have.

7. The Combo Plate - pick any three of the previous items and throw in an infection, just to keep it interesting.

Half Way Through

2007-07-27T21:50:00.000-07:00

Today's chemo was the half-way mark (end of the third monthly session, in a six-month course of treatment.)

This week's experiences at the HMO clinic were discouraging. It's difficult getting info from these folks. You see a different caregiver each time, and you never know who it's going to be. They don't seem to communicate with each other very well. And some days, like today for instance, we get to the designated clinic at the designated time, and no one is at the reception desk. Well, this is not unusual, and the waiting room is full of other patients, so we just take a seat and wait. And wait. More patients arrive. Soon we start comparing notes:
"When was your appointment?"
"Ten minutes ago, and yours?"
"Now."
Then Dave heard the sound of a dot matrix printer, coming from somewhere else on the eighth floor. He went off to investigate and came back with the news that everyone was supposed to check in at the other clinic on the other side of the building. So everyone gets up and troops over there. Dave goes in for his infusion. More patients arrive at the first clinic and start waiting for the non-existent receptionist. This happens frequently. When you see an empty desk, you can never tell if they just stepped away for a bathroom break, or for lunch, or if they're on vacation.

This last round of chemo was harder on Dave than the previous ones. He spent most of Friday in bed (after we got back from the hospital.) I'm not sure what's going on with his blood work because we have not been able to get a copy of the last two reports. I'm not sure what the plan is for his treatment/medications, because no one could answer those questions. I finally got an outside source to answer my question about Dave's CBC from last week - the blood showed, "many lymphocytes with cytoplasmic projections which appear like hairy cells." I was concerned about whether Dave might have Hairy Cell Leukemia. Dr. Terry Hamblin from the acor CLL forum, said that this happens sometimes, but Dave's profile still looks like CLL.

So I was somewhat relieved. But I'm still worried about other stuff. Like, shouldn't they be cutting back on the ProCrit now that his Hct is near 30? (That stuff has some potentially nasty side effects.) And wouldn't it be a good idea to give some more B-12 since it had such a good effect? And how bad is his WBC now (it was climbing into the stratosphere on Tuesday)? We only see the doctor once a month, and the other so-called "avenues of communication" are useless. Right now I'm feeling too worn down to muster the energy to be the kind of pain-in-the-ass that gets her questions answered.

Dave's still looking pretty good:

Quick & Short

2007-07-26T07:43:00.000-07:00

Just a brief update to let you know that Dave IS getting chemo this week. His bloodwork on Tuesday looked better in some ways - at least the Red blood cells were up. More bloodwork was done yesterday before the chemo was infused, and he's due for more chemo today and tomorrow. I'll write more this weekend.

Needle Time

2007-07-22T17:47:00.000-07:00

OK, new week ahead. Blood tests on Tuesday, then (maybe) chemotherapy to follow. Depends on whether Dave's anemia has improved, or in other words - does he have enough Red Blood Cells to tolerate the intravenous "draino" (Dave's term.)

He's been getting weekly injections of ProCrit and daily injections of B-12 vitamins. Good thing he's not phobic about needles.

In fact, this morning Dave announced that when he goes into remission, he intends to get a tattoo! He wants me to design an image of a Phoenix in flight, carrying a Nikon in his talons.

Speaking of needles . . . last week, we bumped into our friend Jane at the lab. She was also waiting to have some bloodwork done. As a more experienced patient, she gave the Dave the low-down on students versus experienced phlebotomists (don't let the students draw your blood, when you're getting stuck every few days and your veins are getting harder & harder to find.) They both got called into the back at the same time, and a student came up to Jane, who politely asked for a regular staffer. So the student moved over to Dave, who was thinking about what to say and how to say it, when they heard Jane calling out from the other side of the curtain, "He doesn't want a student, either."

He must be part Sherpa

2007-07-18T10:44:00.000-07:00

Dave is extremely anemic now but he still manages to walk up the hill to and from the hospital, and up & down the stairs at home, with just minimal shortness of breath, and no complaining.

We got to the hospital today and were told that his chemotherapy was canceled for the rest of this week, because his blood counts are too low. As of yesterday afternoon:

WBC 7.5 (and climbing again, after a low of 6.5)
RBC 1.67
HGB 6.5
HCT 19.5 (and dropping rapidly)
Platelets 131

He now has Autoimmune Hemolytic Anemia, so they have started him on high-dose Prednisone. He goes back next week for more blood work and (maybe) more chemo.

(Image is Ang Dorjee Sherpa celebrating his 8th summit of Everest - by Alan Arnette)

A Quick Update from Dave

2007-07-17T19:19:00.000-07:00

This is Dave, dictating from the easy chair:

I consider today's clinic visit a victory. My doctor straightened out the medication issue with a hand-written prescription to the pharmacist. She was as upset with the situation as we were. While yesterday's blood tests showed that my anemia is a bit worse, I actually feel better than I have in months. While the anemia is a concern, my doctor is taking extraordinary steps to get to the bottom of this issue and remedy it. I do have confidence in my doctor and today Anna expressed the same. It is this HMO system that we really have to work like a dog. We're figuring it out as we go, and it's good to know we have the doctor's full support. I continue to go to work regularly. I'm still photographing. At worst, I just have to take things a lot slower.

It doesn't take much to elevate the stress level. And I suspect it will remain that way until I'm through this round of treatment, which will end in October. Anna seems to feel the stress sooner and more intensely than I do. I think all her years as a nurse have skewed her perspective. Which is understandable, but sometimes too much information can increase anxiety. For example, I once met a guy who worked on the construction of BART's Transbay Tube. To this day, he refuses to ride BART. Now, do I really need to know that? So I am really working at ways to reduce Anna's stress and anxiety.

The bottom line is - things are going pretty darn well. And though there will be frightening moments, the future is looking bright.

Warmest regards,
Dave

Three Little Pills

2007-07-16T18:48:00.000-07:00

(So, you might be wondering what happened with the Famciclovir prescription? Long story. I'll spare you details, but we managed to squeeze THREE PILLS out of them - enough to give Dave his regular doses for today and tomorrow morning. Tomorrow afternoon the doctor has to justify the use of this drug with the HMO, before they will agree to cover any more of it ( the HMO would prefer that she choose something cheaper.)

I've spent about 40,000 hours in hospitals - mostly as a nurse, but also as a patient and as friend/family of patients. And the most important piece of advice I can give anyone who needs to enter a hospital (inpatient or outpatient) is this:

Do not ever, ever cross the threshold of a hospital entrance, unless you have a buddy with you.

It's a dangerous, mind-bending universe unto itself. Trust me - you will need help.

(Image: "Modern Master Dissipation" by Andy Diaz Hope - made of an archival photo, cut & stuffed into gel capsules - see it at Catherine Clark Gallery in SF.)

Round 3

2007-07-15T17:32:00.001-07:00

Tomorrow is the first day of this month's "chemo week." Dave has chemotherapy treatments once a month and this is the third month/treatment. Each treatment regimen goes something like this:

"Week 1", Monday - lab tests to see how his liver, kidneys, and bone marrow are holding up to the chemo.

Tuesday - the doctor physically examines him to check on the condition of his lymph nodes, liver, spleen, and so forth. Then she orders the treatments for the next few days.

Wednesday, Thursday, Friday - Chemotherapy infusions and any other treatments the doctor orders.

Saturday & Sunday - Sleep.

"Week 2", Monday - Dave thinks about going back to work, but usually decides against it.

Rest of "Week 2" - Dave slowly returns to work, for short periods.

"Weeks 3 & 4" - Dave's appetite and energy slowly return, or not. Lymph nodes swell up, and then go down. Night sweats come and go. Various other symptoms unexpectedly appear on stage, spread a little terror, and then fade into the wings. By "Week 4" he can finally eat a little bit of tomato sauce, so he gets to have his favorite Italian and Mexican dishes once or twice, before the next round of chemo puts him back on a bland diet.

Then it's time to start the whole thing over again.

Although this is the third cycle coming up, it hasn't quite reached the point where it could be considered routine. Last month, the anemia and ProCrit injections were the big new thing we needed to adjust to. This month, who knows? If the anemia hasn't improved, he may need a blood transfusion. But I can tell you what I'll be doing first thing Monday morning - fighting with the HMO over Dave's medication coverage. Theoretically, his insurance has drug coverage, with a $10 co-pay. In practice, they seem to make exceptions to that plan whenever they feel like it (sometimes they charge $28, sometimes $65 - if there's any rhyme or reason to these figures, I haven't discovered it. And he's on 5 prescription drugs - so far.) The latest problem is the Famciclovir - a drug that fights viral infections. Dave has been taking it since the first day he started treatment, and he is expected to be on it for the next 6 months, maybe longer. This is a life-or-death kind of medication. He called the HMO pharmacy last Thursday, per their policy, to notify them that he had 24 hours supply left. They said he had no refills ordered. Wrong. Twenty-four hours later (on Friday), he had no Famciclovir left, and we were still arguing with the pharmacy. So Dave went to the Oncology clinic and talked to one of the nurses. Dave's doctor wasn't available, but the nurse got another doctor to write a new prescription for the Famciclovir, then he went back downstairs to the pharmacy. After the usual eternity in the waiting room, his name came up on the board, and he went to the counter, where they told him his drug was ready - and he owed them $462! He argued, he pleaded, but they were unmoved. Of course, by now, the clinic was closed for the weekend, so he came home without it.

After I got the news, I spent the next few hours thinking I was going to be a widow sooner rather than later, but eventually I got past it. We hunkered down for the weekend, in extreme infection-avoidance mode. Tomorrow I go into warrior mode.

Stay tuned . . .

(Image is "Kali" - a painting I did in 1996.)

An Introduction to Dave's CLL

2007-06-24T17:04:00.000-07:00

People keep asking me Dave's diagnosis, Leukemia in general, and the whole cancer-of-the-blood/immune-system ball of wax. So here's the story, as I understand it, so far. (Any of my medical friends who notice factual errors - please point them out, thanks.)

White Blood Cells (WBCs) are Leukocytes, which is where the "Leuk" in "Leukemia" comes from. These cells are made in the bone marrow and circulate around the body doing their jobs. The root of the problem in Leukemia is in the bone marrow, where the cells are made.

There are several sub-categories of WBCs. Think of them as your body's military & law enforcement, and the different sub-categories are branches of the Military. WBCs normally make up about 1% of the "population" of cells in your blood. Most people recognize the need for a military, but you wouldn't want to see too many of them, getting into our daily lives. Most war zones are giant models of Leukemia in action.

Red Blood Cells are the long-haul truckers, carrying vital stuff back and forth around the whole body. Platelets are the construction workers, and highway maintenance crews, fixing the infrastructure. These guys are often part of the collateral damage when the WBCs get out of control. This is the case with Dave - right now, there just aren't enough truckers or maintenance crews to keep up with demand.

The different branches of the White Blood Cell (military) are:

Neutrophils (Army, Navy, & Air Force) - the first responders, the grunts. They go after bacteria and fungi. They make up 65% of the WBC military. They take large casualties at the site of conflicts, and their dead bodies are the main component of pus.

Lymphocytes (FBI & the CIA) - They infiltrate other cells in the body, looking for terrorists (intracellular pathogens and viruses) and organized crime (cancer.) They also carry out assassinations on wacko cells. They are the second-largest category, and usually make up about 25% of the WBCs. There are two sub-categories of Lymphocytes: B-cells & T-cells. In CLL (Dave's cancer,) it's the B-cells that are causing the problems. More about them later.

Basophils & Eosinophils (IRS, ATF, & EPA enforcement) - Small number of specialized cells that focus on parasites and allergens.

Monocytes & Macrophages (MPs and interrogators) - Besides ordinary defensive activities, these cells also gather information on the enemy when they take them into custody, and then this information is passed along to the Lymphocytes, who use it to tailor specific defenses.

Dave has CLL, or Chronic Lymphocytic Leukemia. "Leukemia" just means too many white blood cells. "Lymphocytic" means that it's the Lymphocytes which are getting out of control. There are so many of them, that they are interfering with the other blood cells, including the other kinds of white blood cells (like the Neutrophils.) Furthermore, they are dysfunctional Lymphocytes, so they're not even doing their own jobs very well.

Not enough Neutrophils is called Neutropenia. Without his "first responder" Neutrophils, Dave is particularly vulnerable to bacterial & fungal infections. His dysfunctional Lymphocytes leave him vulnerable to viruses. These dysfunctional Lymphocytes are hard to stop, harder to remove. (More about treatment, down the page.)

OK, so that's the general picture. But the specifics matter. If you say that someone has CLL, it's about as informative as saying that they have a feline pet. You were thinking, maybe tabby cat, but what about the guy who had a 400 lb Bengal tiger in his NY city apartment? There are many different kinds of CLL, and they differ according to the nature and degree of the Lymphocyte dysfunction. There may be chromosome abnormalities and/or immunoglobulin mutations that distinguish more aggressive and less aggressive forms of the disease. Some people can live for decades with CLL, and they only need occasional chemotherapy pills to keep it in line. Other people require the most radical treatments in order to survive for a couple of years.

Then there's the staging. CLL is a cancer (meaning uncontrolled growth of a cloned cell, in this case a B-cell lymphocyte) and all cancers are staged, by assigning a number between 0 and 4, indicating the progression of the disease. Higher numbers indicate a more dire situation.

I do know that Dave is Stage 3, but, I don't know the status of his chromosome abnormalities and immunoglobulin mutations. I'm pretty sure they ran the tests, but I can't get anyone to tell me the results. I do know that they put him on a "shock and awe" regimen of pretty high-powered chemo drugs. His oncologist went on vacation right after Dave started chemo, and the guy who's covering doesn't seem to want to share much info. So I'm waiting for the main doc to return.

Chemotherapy is the most common tactic used against the dysfunctional Lymphocytes, and that's what Dave is getting. But Chemo is like a nuclear bomb. Chemotherapy drugs cause tremendous collateral damage, taking out large numbers of all the other, different kinds of blood cells (plus some of the other cells in the body, like the lining of the GI tract.) Fludarabine, which is the primary chemotherapy drug that Dave is taking, will suppress T-cells to levels as low as AIDS for as long as 2 years. Plus, chemotherapy can create the seeds of other cancers, which will manifest at some point in the future. And just like bombing Afghanistan didn't rid the world of al-Qaida, chemotherapy doesn't completely eliminate the dysfunctional Lymphocytes. After each bout of chemo, a few of them start reassembling and growing more cells, and each time they do this, they get more resistant to the drug, until finally it doesn't work. Then you have to find a new drug. How rapidly the cancer cells get resistant to chemo depends on which version of CLL Dave has, and how aggressive it is. Some get resistant in 19 months, some take 15 years. The period during which the chemo is over, the body is recovering from the fallout, and the dysfunctional Lymphocytes are plotting a return, is called "Remission."

There are other treatments besides chemotherapy.

The most radical therapy is not chemo, but bone marrow transplant, also known as a stem cell transplant. It offers the only chance, but no guarantee, of a true cure. There are at least a few different kinds of bone marrow transplant, but they all have in these things in common: the patient receives high doses of chemotherapy and total body irradiation, with the intention of killing every single white blood cell in the body. This is known as "conditioning." Then, stem cells from a closely matched donor are injected. The plan is for the donor cells to take up residence in the bone marrow, a process that may take 3 to 5 weeks. If it works, it may be a year before the immune system reaches normal levels, but if it does, and if all of the old dysfunctional cells were killed, then the cancer is really and truly gone. Of course, the "conditioning" process takes a person to the brink of death and some people fall over the brink - about 20% succumb to complications of therapy, which include massive infections, major organ failure, and secondary cancers. About 60% achieve remission lasting 2 years - I haven't been able to find numbers on longer survivals. I could be wrong on these numbers - I'm still wading through tons of material on this topic.

There's also a newer kind of transplant, called a "Mini-Transplant," that has a lower mortality, although it's still no picnic. With the "Mini," the goal of the "conditioning" is not to eliminate the entire immune system, but just enough to prevent rejection of the donated cells, and to allow a mixed population of donor and original cells to grow. The donated (healthy) T-Lymphocytes can assassinate the original cancerous cells. If the donor is a a closely matched family member, additional Lymphocyte transfusions can be given, as necessary.

Another kind of treatment for CLL is gene therapy. The goal is to trick the killer T-cells (The CIA, in our military analogy above) into targeting the cancerous B-cells. The way they do this is by removing some of the cancerous B-cells, genetically modifying the cells so that they "turn on a flashing neon sign" that signals their status. Then the modified B-cells are returned to the body, where the killer T-cells get all excited and start eliminating them, and then theoretically keep on going to eliminate the other cancer cells, too. And a similar kind of biologic treatment is monoclonal antibodies. The antibodies are made in a lab, sometimes by combining mouse and human proteins and then injected into the patient. The antibodies migrate to the B-cells and stick to them, creating a marker that signals to the killer T-cells that these particular cells need to be taken out. The obvious concern with these therapies is, what are the chances that the killer T-cells will get overly aggressive and start killing good cells? The gene therapy and monoclonal antibody therapies are still very new, not done in that many places, and I have not yet found a good source of comparison numbers for evaluating their effectiveness.

There are some interesting new clinical trials, including Radioimmunotherapy and Trojan Horses, but I'm not going to go into those now, since I still don't know about his chromosome abnormalities and immunoglobulin mutations.

Further complicating this picture is the fact that Dave had Mononucleosis (twice) in his 20s. Mono is a manifestation of the Epstein-Barr virus (EBV) which, like herpes, sticks with you for life. It hides out in the B-cell Lymphocytes, mostly under the radar, but while it was running amok, causing Mononucleosis, it very likely caused permanent damage to the T-cell Lymphocytes. This makes him exceptionally vulnerable to immunosuppressive drugs like Fludarabine & Decadron (which he's getting.) I'm hoping the doc is aware of this (yes, they were told about his mono) and has a plan for dealing with it. I'll continue to follow up, and will post the info when I get it, if any of you are still with me here, and want to know.

Adding to my worries (not Dave's - he doesn't want to know any of this stuff) are these issues:

Dave seems to be allergic to sunscreen - we've tried a few kinds now, and have not found one that he can tolerate. Not only do the chemo drugs make him more likely to suffer sun damage, but CLL patients are 10 times more vulnerable to skin cancers than the average population, and the skin cancers they get are more aggressive. So for now, we're looking at hats and walking on the shady side of the street. If you totally avoid the sun, you will likely suffer from vitamin D deficiency and, besides its well-known function in the bones, Vitamin D reduces the reproductive rate of cancer cells. So we're trying to find a good source of D3 (cholecalciferol.)

Anemia is a lack of red blood cells. Remember the long-haul truckers I mentioned near the top of this entry? Their most important cargoes are oxygen and carbon dioxide. Dave has anemia, or not enough trucks. We can speculate about the reasons - there are plenty of suspects: the over-population of dysfunctional B-cells, and the collateral damage from the chemo are probably having negative effects on the number of red blood cells. But the monster under the bed is Autoimmune Hemolytic Anemia (AIHA.) It's when the cancerous B-cells spread inaccurate information about the Red Cells, which are then targeted for elimination by the killer T-cells or the Macrophages. About 15% of CLL patients develop AIHA. It's scary and harder to control that the other causes of anemia. We hope it's not that, but we don't know at this point. So, for now, we're trying ProCrit, a drug to encourage his bone marrow to make more red blood cells. Honestly, they're not expecting much improvement - they just hope to keep his anemia from getting any worse. If it does get any worse, he'll need blood transfusions, because you have to have red blood cells to keep breathing, thinking, living.

Richter’s transformation, an aggressive B-cell lymphoma, can occur in CLL patients, often in response to a reactivation of the Epstein Barr virus (EBV). The EBV is usually kept under control by the T-cells, but many CLL treatments, including Fludarabine, repress the T-cells. This syndrome is sometimes called "diffuse large cell lymphoma." It's not common - it occurs in about 10% of CLL patients, but the prognosis is very poor - less than one year.

Believe it or not - that's a simplified version of the things I've learned in the last few weeks. I've found the CLL Topics site to be the most helpful in my search for information. They have an extensive catalog of articles related to CLL, and it's written in everyday English. You can start there and then branch out to other sites, once you've gotten the correct terminology down, and once you know what you're looking for.

The Waiting Room

2007-06-21T08:40:00.000-07:00

Thinking that I was suffering from a lack of meditation time, I decided recently to eschew reading material and use my time in the Oncology waiting room in quiet reflection. Bad idea. Not doing that again. Even People magazine would be better . . . well, maybe not.

It was very quiet, and at any given time, there would only be three to five people in the room, most of them staying ten minutes or less. The receptionist and I were the only ones there for the whole 70 minutes. (The receptionist, incidentally, is a goddess. Mature, womanly, all-knowing, awe-inspiring, a source of comfort and fear.)

After an undetermined time of focused breathing, I became hyper-aware of the people passing through and they nearly broke my heart.

A couple of young men came alone, but everyone else had company. All ages and genders. Some were jauntily whistling in the dark, while others stared morosely into the abyss. An old guy with his Latina caretaker sidled his wheelchair up to the receptionist's desk and cracked jokes. A young Asian woman (bald, wearing a body brace like Sachiko's) walked in slowly and then gingerly lowered herself into a chair, as if her body was made of the thinnest blown glass. Her husband sprawled across three seats on the opposite side of the room and talked on his cell phone while folding and unfolding his arms and legs.

A forty-something woman, with her teenage daughter, sat on my deaf side. They were having an urgent conversation but the mother was trying to be discreet and when she opened her mouth all I could hear was the sound of dry leaves on the wind. The daughter was more audible:

"How much more aggressive can I be? I went to Physical Therapy six times, to Urgent Care three times, to the Emergency Room . . . I'm not a nurse or a doctor - if they say I should get this treatment first, what can I say? ... They say they won't pay for it unless it's an emergency. Isn't this an emergency? My life is at stake. I don't know . . . I don't know how it works."

And so on, like sitting near the ocean, while waves of emotion crash up and then recede. And knowing that I was a wave, too.

(Some of us like just watch the waves, some of us get wet. Photo of a skimboarder was taken at Ocean Beach in SF, on a warm day in January '07, © Anna L. Conti)

1,623 Dollars

2007-06-20T14:42:00.000-07:00

I guess the oncology pharmacist must have gotten out of the wrong side of bed this morning. First she forgot to get Dave's chemo ready, leaving him sitting in the infusion chair, with an IV running, for over an hour before the nurse was able to start the infusions (which took another hour and a half.) Then, when the nurse told me to go to the pharmacy to get his Procrit (the Erythropoietin mentioned yesterday) the pharmacist was incredibly rude; first pointedly ignoring me, then emphasizing the fact that this drug cost $1,623, so I "should be grateful" that Dave's insurance covers most of it. She circled the $1,623 on the receipt, then tapped it twice with her pen before charging me $25 for the drug, plus $3.55 for the syringes to inject it. She was too cheap to give me a few alcohol swabs. Do I feel grateful? I haven't decided yet. So far, they're charging us $200 to $300 per month for various co-pay expenses. Nevermind the thousands of dollars they've already collected in monthly premiums over the last TWELVE years.

I'll be giving Dave these injections at home, and the nurse supervised me giving him his first injection after his infusion was done. Then we went to lunch.

That's Dave, above, after I handed him the pharmacy bag and told him what it cost.

We Have Wheels

2007-06-19T16:40:00.000-07:00

Due to a truly unfortunate situation, I have been able to drive Dave to and from the hospital this week. Last week, I was worrying about how to talk Dave out of taking the bus to his chemo treatments. But now, with a lovely comfortable car sitting in the driveway, and with me awake, dressed, and ready to drive him there, it's been an easy sell.

I feel grateful, guilty, happy and sad in equal measures.

Here's what happened: our friend, Joyce, who has been a real support in this whole adventure, drove over to visit last Thursday. She mentioned that she was thinking of buying a bicycle. I have one I'm not using, so I said, "Just take mine." She got on it to try it out, fell off a few minutes later, and broke both wrists. Seriously. Surgery and a cast on the left, a splint on the right. She lives alone. Think about that for a few minutes. What would you do if you suddenly couldn't use either of your hands? So her car is still in my driveway and she said I may as well use it. But every time I start thinking, "Gee this is a nice car, it's so convenient, I can see why people get addicted to these things," I get an immediate pang of, "Oh my gawd, Joyce is suffering, why did I ever open my mouth about that bike," and I get an image of her crashing into the street, and I get a sick feeling in my stomach.

(Image is "Cadillac," a watercolor painting by Robert Townsend, currently at the Hespe Gallery in SF.)

Good Lab results

2007-06-19T13:53:00.000-07:00

Good news today. The lab work shows that Dave's white blood count is down to 8,500 (nearly normal) from his pre-chemo level of 43,000. Unfortunately, his red blood cells were also whacked by the chemo and he was anemic before they started. It's amazing to me that he can get around as well as he does, with a Hgb/Hct of only 7.5/21.8 (less than half what it should be.) We parked about 2.5 blocks from the hospital, some of it an uphill walk, and he just kept on puffing up the street, with no complaints.

(We could have parked in the garage directly under the hospital, but it's about 6 stories below ground; dark, cramped, hot, with a constant, loud thrum. It gives me the heebie-jeebies, and at each bend in the ramp, I keep expecting to see the gates of Hell. Dave has kindly agreed to avoid it when I'm with him.)

Anyway, back to tomorrow's chemo - another round of Fludarabine, Mitoxantrone and Decadron. And the new addition: Erythropoietin, which is supposed to "encourage" his bone marrow to start making red blood cells.

The doc wasn't too concerned about Dave's swollen lymph nodes, saying that they were full of dead cancer cells, and would shrink soon.

So, we're feeling cautiously optimistic today.

(Photo is unidentified lab tech from 1950s, via NCSU library.)

Catch Up

2007-06-18T09:44:00.000-07:00

Well, it's been a while since I updated things here, hasn't it? Sorry about that. There's no particular reason - I've just been dropping the ball on some things lately. I'll try to catch up now . . .

Today is the official start of the second round of Dave's chemo. He went for lab work today, which is (partly) how the doctors will evaluate the first round of this course of treatment. We talk to the oncologist tomorrow, then the drugs start on Wednesday.

He's in a very upbeat mood, and so far, the side effects haven't been too bad. (He's had three weeks to recover from the first round.) The fatigue persists; his skin is clearing up; his lymph nodes are quite swollen, and are causing some discomfort.

We're both a little nervous about the upcoming week. Not so much about the chemo itself, but more about the lab results and doctor's evaluation.

(photo is "Harrison Webster running to catch up" by Jason Molenda)

Thank Your White Blood Cells

2007-06-08T10:10:00.000-07:00

Thank you everyone who's written and emailed (and commented here) - it helps, really. I'm sorry that we can't visit with you all in person. I'd love to throw a party and have everyone over, but we have to to seriously limit visitors. Dave has almost no functioning immune system. He is taking quite a few antibiotics and anti-virals, but they're no substitute for a healthy batch of white blood cells (remember to thank your white blood cells tonight.) We have invested in tons of hand sanitizers (found a great natural one: CleanWell.)

Then there's the low level of red blood cells, which makes him tire easily, and the low platelets which makes him bleed/bruise easily, and you can see why I get nervous when he leaves the house each day. According to the Neutropenic Diet (and the nutritionist at Kaiser concurs) eating anywhere outside of your own home is a high risk activity. But Dave feels like, "Why live in San Francisco, if you can't eat out?"

I'm slowly learning more about leukemia and the many different types and treatments, etc. It's a steep learning curve for me. Partly, I guess because I've been away from nursing for so long, partly because I haven't had much time to "study." There's always too much to do around here. I'm just now getting ready to get back into painting. Today I was planning to prepare another panel for my next painting. We'll see if it gets done . . .

Dave is doing OK. Not as good as I'd hoped, not as bad as I'd feared. In spite of a decent appetite, he's still losing weight . . . not that he can't spare a few pounds, but it's an ominous sign that worries me. Very soon we will have to replace his entire wardrobe, or at least get all his slacks taken in. (Anybody know of a good place to do that?) He has developed strange lesions on his face - sort of, but not quite, like nodular acne. Some look like burns. He's getting unusual aches and pains that might be lymph node enlargements. He thinks the pains are muscle pulls, from riding MUNI - not a very comforting thought, to me. He's back at work, but doing short days - he doesn't have the stamina to go more than 5 to 7 hours. The night sweats continue, in milder form - his temperature is slowly climbing, but he's not febrile yet.

We have almost finished all the household modifications that we started right after the diagnosis. The bedroom is upstairs near the bathroom; the studio is downstairs; there's an extra guest-sleeping-area in the basement. The main thing left is assembling the weight machine that Susan got when she was down here last time - we're planning to do that this weekend. Then Dave can work on rebuilding muscle mass, when he has the energy for it.

Back to Work

2007-05-30T07:17:00.000-07:00

Dave has slowly gained strength over the last two days, and he's going to try a half day of work today. Things are looking up.

Crashed

2007-05-27T20:19:00.000-07:00

Dave's sister left yesterday morning. No chemo this weekend, so it's "rest" days. Good thing, because we were both so exhausted that we went to bed at 5pm and slept for 14 hours.

Roger and Leigh stopped by earlier in the day to help move furniture - we're still emptying out the old painting studio and getting it ready to paint. Then we'll make it the new bedroom. Pam and John came by later to say hi and drop off some skin salve. I'm afraid we were zombie-like hosts. Apologies in advance to any visitors we fall asleep on.

Dave was still pretty whipped this morning, and getting worried about having the energy to return to work on Tuesday. He's been hanging out in the "dead elephant" today (see above.) That's the chair my brother brought over here a couple of months ago, for reasons too complicated to go into right now. Dave didn't like the chair, and he dubbed it the "dead elephant." As soon as possible, he banished it from the living room, so I used it in my studio. But with all the furniture rearranging around here, the elephant landed back in the living room and Dave's been using it more and more. Today he finally announced that it was a great chair and he was glad to have it.

Last Day of Chemo (for now)

2007-05-25T20:45:00.000-07:00

Dave was pretty wiped out this morning, so he slept in and rested before heading over to the hospital for his third chemo infusion. Afterwards, he was feeling a little better, so we went to the Zephyr Caffe for tea and then home for a little soup. He's still pretty tired, but he's taking this chemo regimen way better than I'd expected.

His multi-medication schedule (at home) is so complicated, I had to put it into a spreadsheet just to make sense of it. Also hassle - setting the alarm for midnight & 6am to take medications. Still, it's better than being in the hospital.

Image above: Dave at the pharmacy, picking up more meds to go.

Second Day on the Level

2007-05-24T22:18:00.000-07:00

Dave was still wired this morning and after breakfast he went out to Costco with Susan and me, to look for a giant bottle of alcohol hand sanitizer (which we never found.)

Then it was on over to his second day of IV chemo this afternoon. This time Susan & I stayed out in the waiting room while Dave went in by himself. He was able to chat and compare notes with the other guys getting chemo, as they sat in their recliners. He almost seemed to enjoy it and when he left he was anxious to get over to the garage to shoot some photos from the roof.

He was slowing down a bit by the time we got home and about mid-way through dinner he finally bonked. He barely made it to bed before dropping off to sleep.

He's been having increasing episodes of hiccups, which are causing him some distress, but no nausea so far.

First Day of IV Chemo

2007-05-23T21:52:00.000-07:00

Today was a long session at the Oncology Clinic Infusion Center. We were there for almost 3 hours, but mostly we were meeting people, listening to instructions and waiting . . . lots of waiting. The infusion itself was actually anticlimactic. Afterwards, Dave felt so good, he wanted to go to Mel's for a late lunch. He's getting Mitoxantrone and Fludarabine, plus Decadron. The Decadron had him so buzzed, it was like he'd had three cups of coffee, and he's been in high spirits for the rest of the day.

Chronic Lymphocytic Leukemia

2007-05-22T12:55:00.000-07:00

We just got back from the hospital. The official diagnosis is chronic lymphocytic leukemia. Dave's going to the hospital (as an outpatient) for the next three days, for IV chemo. Then he has 4 weeks of "rest," then another 3 days of chemo, then 4 weeks off, and so on, for 6 months.

Then, assuming his tests show a satisfactory improvement, he will have 18 to 24 months of "normal" life. Satisfactory test results mean that the percentage of cancer cells in his bone marrow drops from (the current level of 80) to 20 or less. The cancer will slowly return, and when the levels get too high, he will return for another round of chemo.

The prognosis for this kind of cancer is about 10 to 15 years. Better than the 1 to 3 months they first offered us, but not not good enough for Dave. He's a little pissed right now.

Echo today

2007-05-21T21:24:00.000-07:00

Dave had more tests today, including an Echocardiogram (which is what he's doing in the photo above.) Nothing painful or too scary, and we got out of the hospital earlier than we'd expected.

Tomorrow is the big day - the meeting with the Oncology team to hear the complete diagnosis and treatment plan. Dave's sister Susan and I will be going with him, to make sure all his questions get answered and to make sure he gets the best care.

Some Good News

2007-05-20T19:54:00.000-07:00

Thanks for all your good wishes - Dave has been really touched by the responses from his friends. We had some good news yesterday - the preliminary pathology reports showed that his leukemia was actually the chronic type, rather than the acute type, and since "chronic" implies persisting for a long time, it sure sounds better the previous scenario, which had him checking out in the next few weeks to months.

He's handling this first chemo routine pretty well, with just fatique, mental fuzziness and mild nausea so far.

We still don't know much more than that, though. He's going for more tests Monday, then the big oncology meeting on Tuesday, which is when we hope to find out exactly WHAT he has, what kind of TREATMENT they're planning, what the PROGNOSIS is, and what the financial implications will be.

Dave's sister is flying onto town tomorrow and I think she'll be here a week. By the end of that time, we should have a better idea of what's going on and what kind of help we may need. The most immediate thing that I can think of is rides to and from the hospital for his treatments. Once I know what kind of schedule he'll be on, I'll let everyone know.

Dave has leukemia

2007-05-18T05:09:00.000-07:00

Dave was diagnosed yesterday with acute leukemia (exact type is still pending.) I'll know more about the prognosis, etc on Monday, but it's not good. He's already receiving chemo and he'll be in the hospital for a month. If he makes it through this first round, he'll be in for several more. He's coping fairly well, considering. He's not in too much pain, and what pain he does have is from the hospital procedures, rather than the disease itself. He's got the usual chemo discomforts, and I expect that those will increase in the coming weeks. He can't have flowers or uncooked fruits or vegetables. His appetite is rapidly vanishing. He wants to be taking photos, but we haven't figured out (yet) how to do that in the hospital. His visitors are extremely restricted because of the severe risk of infection. I'll be contacting everyone again next week about how he's doing and if/when/where people can visit.