Saturday, December 27, 2008

Baby It's Cold Outside

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.

Friday, December 26, 2008

Monday, December 8, 2008

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

Friday, October 10, 2008

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.”

Sunday, September 28, 2008

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:

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

Friday, August 15, 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.

Thursday, August 7, 2008

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.

Tuesday, July 29, 2008

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

Wednesday, June 25, 2008

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

Saturday, May 17, 2008

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.

Wednesday, April 30, 2008

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

Friday, April 4, 2008

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.


Thursday, February 21, 2008

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.

Saturday, February 2, 2008

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.

Friday, February 1, 2008

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!

Thursday, January 31, 2008

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.

Wednesday, January 16, 2008

Knee Takes Front Stage

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.)