Kaiser Scores Some Points

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

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

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

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

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.

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

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.