Sunday, October 26, 2014

2014 Update

Dave, gallery-sitting at our new BigCrow Studios Exhibition Space. 

That good feeling we had, leaving Dave's last treatment, in December 2012 - it lasted about a year. Not nearly long enough, nor as long as we had hoped. About one year later, in December 2013, Dave came down with a vicious respiratory infection. And he has not been well since then. In 2014 it's been one thing after another, mostly respiratory infections, including a few trips to the emergency room. May was the worst month, with pneumonia, shaking chills and a temperature of 104.8. (Good thing Ebola wasn't here then.) He still has shortness of breath on exertion, white spots on the back of his throat (continuous, for months) and lymph nodes enlarging to the point that they are once again impinging on his other organs (per CT scan, and symptoms.) 

He missed a lot of work days and eventually had to stop working. These days, it's hard for him to leave the house (and his air purifier) for very long, or walk more than a few blocks. He applied for disability (SSDI) and was turned down. We have an attorney and are appealing.

Meanwhile, we spend a good portion of every week jousting with insurance companies, health care providers, doctors, lawyers and government agencies. Highlights have been: lab companies and doctors' office staff who can't do simple math; the moron at Lab Corps who told me, "Yo!-F-Y-I- your doctor didn't put the right code on that sample," (so what is the right code?) "I don' know - I ain't no medical person." The doctor who told Dave that he couldn't breathe well because he "wasn't fit" and needed to "exercise more"; the three doctors who told Dave that his months-long throat infection was "just a viral infection - it'll be gone soon" and the $50 to $500 copay we have shell out every time we get one of these blithe pronouncements.

And by the way, I hate Blue Shield of California. If you were thinking of signing up with them, think again. They are expensive; impossible to reach when you have any kind of question; vague and opaque about what is covered and how much they are willing to pay, but one thing for sure is they don't want to pay much. I plan to spend the next 2 weeks trying to research a different insurance that will still let us get Dave's treatment at the Bryan Hemming Cancer Care Center (a wonderful place.)

We see his oncologist again in mid-November and hope to get some kind of serious treatment plan at that time.

All that said, we're both grateful he's still here, unlike some of our fellow CLL travelers (on the sidebar.) We opened an exhibition space in the front of our house, to show artwork and photos by us and our friends. Dave doesn't have to leave the house, he can see friends here, and maybe we'll get lucky and make a little money. If you're in the area, check our other website, www.bigcrow.com for open hours and come by and say "hi."

Tuesday, December 18, 2012

New Therapies Coming up

We've been hearing quite a bit about a new therapy called Ibrutinib (eh-BRU-teh-nib.) It's a BTK inhibitor, not chemotherapy, and it is administered in pill form instead of infusion. We hope to learn more about it in February at the Emerging Therapies Conference. But for now, here's a little preview from the ASH press conference on this drug.

Sunday, December 2, 2012

Treatment done, for another 5 years?

Dave finished 6 rounds of chemo (Dexamethasone, Treanda, and Rituxan) in November and his hematologist/oncologist said he should be good for another 5 years. That first dose, in June, was a doozy - with a severe "shake 'n bake" reaction, followed by a pneumonia that landed him in the hospital. But since then, he tolerated this regimen much better than the Fudarabine/Mitoxantrone that he got back 2007.

We're hearing some very exciting news about new therapies in clinical trials and hope to get more details at the annual Emerging Therapies conference, in San Francisco, in February.

And I just want to say that having treatment at the Bryan Hemming Cancer Care Center was an extraordinary experience. It's beautiful, comfortable; and it feels safe, calm, and professional. The nurses were wonderful, but then we've always been impressed with the nurses, no matter where Dave has been treated. But this facility was better than valium for soothing anxieties and letting the nurses do their best work.

Wednesday, May 30, 2012

Round Two


In two weeks I start my second round of chemo therapy. It's been five years since round one and I'm due. The treatment will be Treanda/Rituxan once a month for four months. Looking forward to shrinking lymph nodes an getting my energy back.

Photo: ©2012 David W. Sumner

Wednesday, July 6, 2011

Kicked to the Curb by Kaiser

Dave has been a Kaiser member for 17 years, via two different workplaces. The company he was recently working for went belly-up so now he's looking for full-time work and looking for health care.

We knew things weren't going so well at Dave's last company, and knowing he had two life threatening chronic health problems, I tried to call and get another health care option lined up ahead of time. Which was useless. Everyone I talked to told me to call back after Dave was laid off and after his health insurance had expired. Until then, they wouldn't answer any questions.

After we got a notice in the mail from Kaiser, saying his insurance was terminated, we visited them to look into their "options for continued coverage" (noted in the handy little full color brochure enclosed with the "you're terminated" letter.) It was one of those surreal experiences with a smiling functionary behind a desk, telling you how screwed you were. Felt like we were in a Michael Moore movie.

You could get Cobra through your employer . . . oh, your company employed less than 20 people? Then they weren't required to carry Cobra.

You could apply for individual coverage but you'd probably be denied for having a pre-existing condition.

Even though I've been a Kaiser patient for 17 years?

You'd be just like everyone else.

You could use one of our "conversion plans" (which allows you to buy our insurance at obscenely high prices, but we won't reject you for having a pre-existing condition.)

Gee honey, which should we choose, homelessness, or health care (hunger is pretty much a given.) Aren't there any other options?

You could apply for Healthy San Francisco but they won't accept you unless you've been uninsured for 90 days.

So in the meantime? When my Coumadin runs out? Wait until that big clot gets bad enough to kill me and then hope I get to an emergency room in time?

Doesn't it seem a little bit insane that an organization that calls itself a "health care" organization, that claims to care about the health maintenance of its members, would look at a member like Dave (still being monitored and treated for Leukemia and a blood clot in the leg) and just cut off communications with that member? No effort at transitioning them to other caregivers, no diagnosis-specific advice about how to prevent his health problems from spiraling out of control. **It's ALL ABOUT THE MONEY!** "Pay up or die" - that's the true Kaiser ethos.

-- Anna

Saturday, October 2, 2010

More and More


It seems as if each year is busier than the last. That's very good in a way: I have the energy to keep up and I actually add items to our calendar.

After quite a few years of constantly feeling run down and so out of shape, it's amazing to be able leave the office after a day of work and head downtown, meet a group of friends, go gallery hopping, then out to dinner and enjoy long debates and discussions about art and photography and publishing.

When I do find myself slowing down it's because I've spent so much time on my feet and my aging joints are screaming. I enjoy walking and I've been walking so much in the last year my feet and knees are really showing the signs of taking a beating. I've also put new street tires on my bike, but biking actually helps my knees.

The nature of my job is such that my mind is seldom far from thoughts of my own work. I'm able to devote more and more time to my photography, which is consuming more and more of my entire being, which is just fine with me.

It's been three years since I ended the chemo treatment and almost a year since my last Rituxan infusion. My numbers remain good and are fluctuating well within the range of normal. I saw my doctor last month and he said that after my next visit in March of next year we will probably schedule the next two visits eights months apart then go to once a year.

The goal now is to achieve that once a year schedule.

Photo: ©2010 David W. Sumner

Thursday, April 22, 2010

Celebrating What Counts


5 months of chemo
5 blood transfusions
2 years of Rituxan therapy

I never stopped shooting.

Photo: Anna L. Conti

Monday, December 14, 2009

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."