Watch and Wait

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

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

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

Shooting with Darren Katin at SFMOMA Photo: ©2009 Anna Conti

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

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

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?

My Hematocrit is 41.2!

Photo: ©2009 David W. Sumner (People walking by, Union Square, San Francisco, California. 2009)