Friday, February 20, 2009

Why is Adrienne still here?

This is a question we think about often. Is it that her disease is manageable or is that she’s had the best medical treatment available, that there’s always been something when she needed it, and thankfully has responded? I think it’s a combination of the two. Sadly, some people have disease that is so aggressive that nothing will help, but more often, getting the best does make a difference. Last December, Adrienne was as close to death as she’s ever been and now, and yes, she's stressed and tired, but she's living life.

The following was written by a woman named Betsy de Parry who had Non-Hodgkin’s Lymphoma (see

In the case of lymphoma, there are numerous philosophies on how to treat it, and what one doctor suggests does not mean another doctor whose opinion differs is wrong. It simply means that patients have to do their own homework. We have to remember that we are “purchasing” medical services, even if our insurance companies are footing the bills. So let’s look at how most of us make purchases: we shop and compare to find the best value for our money. Few of us buy the first car we look at and we don’t think twice about the telling the salesman, “We’ll think about it,” before leaving the showroom. Even fewer of us marries the first person we date! Why, then, do many of us accept treatment plans without shopping and comparing? What could be more important than shopping for the best treatment when our very lives are at stake?

While not always curable, Hodgkin's can be a manageable disease, but you have to be your own advocate. You have to find the best that's out there at any particular time. You have to be willing to travel. You have to be vigilant about each and every symptom. You need to have hope.

Adrienne felt pretty lousy from the chemo and it was hard for her to fly back on Sunday evening, but she's feeling better now. She even gained a few pounds over the last month. The plan now is to do one more cycle in March and then do another scan. If the scan is stable, she'll take a break. If there's more improvement, she'll get two more cycles. She'd like more certainty about next steps but this is the way it goes for us.

Wednesday, February 11, 2009

Before I talk about Adrienne's scans, I'd like to mention a few people who are going through particularly tough times. Tyler Chambers, a young man from Ohio, who had been through auto and allo transplants like Adrienne, suddenly died on Saturday. Though his disease was in remission, he developed a pulmonary embolism, which was totally unexpected. Please stop by his blog and leave a message for his mom, Kelly, and his family. I can only hope that our thoughts can ease their pain a little bit.

Jessica Wentz, a young mother of two from North Carolina, has refractory disease like Adrienne. She was supposed to go see Dr. O'Connor in New York this week but is in the hospital, quite ill. Please leave her a message at her Caringbridge site.

We just got the scan report this afternoon and are very humbled by the amazing results. I wish everyone could have a Dr. O'Connor who tries to do his best for each and every patient, and who knows what to do. His entire staff is always there, smiling, offering to do whatever they can to make our life and Adrienne's life better. It's not quite remission, but as close as you can get. She has complete resolution of all of her disease, including the spots in the bone. There is still one small spot in the right lung that is "faintly FDG avid" and we aren't even sure that matters. I think Adrienne hoped that it was totally clear, but we'll take it. I honestly believe that Adrienne would not have survived even a few more weeks given the aggressiveness of her disease before the Bendamustine, and to say that we are very, very grateful sounds trivial.

With everyone else who is going through such difficult times, I don't want to celebrate too much and we are painfully aware of how short-lived things can be. Adrienne is coming here tomorrow and Friday for chemo and will go back to CMC on Sunday night. Let's hope she isn't feeling too badly so we can enjoy the weekend.

Friday, February 06, 2009

Scans on Tuesday

Adrienne seems to be feeling really good except for the fatigue. She's anemic when she has a lot of disease and anemic when she's on chemo, so it's a bit of a vicious circle. Gaining weight also continues to be an issue but she promises that she's trying. Scans are Tuesday. We should have results that day or the next but we're expecting good news.