Back from Seattle

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

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

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

Shooting down town with Anna. Our reflection in a window. Anna's first roll of cross processed film. ©2008 Anna L. Conti

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.)

Hanging out in Dale Erickson's studio. ©2008 Anna L. Conti

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

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

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

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

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.