Jan 12, 2018 Latest post:
Aug 29, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated on Paul's battle with leukemia. We appreciate your support and words of hope and encouragement. Thank you for visiting.
As you may have heard, Paul has chronic lymphocytic leukemia (CLL). It means he has an increased number of CLL lymphocytes (white blood cells) in the bloodstream. The condition is often latent with no symptoms for years. Paul was diagnosed with this in 2004 (14 years ago). In late December he developed what he thought was a serious head cold. He tried to get some treatment for it, but it was during the holidays and while he went to an Urgent Care Clinic they did not notice that anything was particularly wrong lacking a blood test.
Paul then went with me and some other friends to Cuba. A trip we had been planning for many months and had been thinking about for years. It was a remarkable trip to an amazing, inspiring, struggling, challenging country. We need to end the Embargo, among other things. During the trip, some disturbing symptoms developed, included extreme exhaustion, some difficulty in breathing and some bloating. We returned late on Monday, January 8. By Wednesday morning, January 10, Paul got an appointment with his regular doctor, who almost immediately said Paul should go to the emergency ward at Sibley Hospital. As soon as they examined him they decided to admit him to the hospital. They are still in the process of giving him tests to determine the exact biology of the disease and if there are any other conditions they should address. It is likely that the first treatment will begin on Friday, January 12. He'll be at Sibley Hospital in Washington, DC until the medical staff is satisfied that he can go home and function. This will likely be Tuesday or Wednesday (January 16 or 17). We are likely going to cancel all non-urgent pre-existing meetings and appointments till we figure out what the new normal is--so please understand that we want to be in touch, but are handling so many new circumstances.
The general course of treatment is a chemo infusion every 28 days over the course of 3 days, on an outpatient basis. This continues for 6 treatments (just under 6 months--or ending on June 7, his birthday).. We are told that other than the three days of the treatment, Paul should be fine continuing with his regular activities. He will be monitored closely from now on. CLL cannot be cured, but it can be treated. The one caution is that he is likely going to be more susceptible to infection (though he has no infection currently).
Paul says it is fine for people to know what has happened, but not to over-dramatize it. He is feeling pretty well (and expects to feel better once the treatments take effect). His is not in any real pain. He is in good spirits--just tired. He will stay in the hospital until he is stable. (Once released we hope he gets a paper saying his is a "stable genius" and meaning it~!
Paul welcomes notes, calls, visits. Text and emails and notes to this site are probably best since he still finds it a bit hard to talk (from limits on breathing, that should clear up fairly soon) and to avoid overload. He (or I) may not respond, even though he appreciates your support. There is just a lot going on.
Paul particularly welcomes any news about more Republican retirements. What you really can do for Paul (and yourselves and the country) is to organize and build the resistance!
Thanks to all of you for your caring and friendship. Paul and I feel grateful for the lives we have, made possible by being in this community with you. And he looks forward to cherishing and growing this community for many more years into the future.