Stay Strong Sandy!: April 2008

Friends Surround Us

Q: Where do you take your friend who has had a liver transplant, whipple, spine surgery, chemo, radiation, who can't drink, and is fighting cancer?

A: a BAR!

Sandy (C), Elizabeth (L), and Beth (R) at the Daughter.

From left, below: Joanne, Judy, Elizabeth, Sandy, Beth, Julie, and Becca (the characters in front are just a lot of empties for a Thursday night...)

The Hollins Stampede

Mary Byrd, Karen, Nancy, Sandy, and Lynne - Hollins College, er...University, class of 1985.

8 bottles of wine on the wall,
8 bottles of wine!
You take one down, pass it around...

And you run out of bottles of wine VERY QUICKLY!

Apparently, those Hollins girls can still put it away.
Not bad for a Tuesday night.

Well done, ladies!

Disappointing Results From the Scans

This is a difficult update to write. The results of Sandy’s scans were disappointing on so many levels.

The cancer has progressed significantly, with advancing tumors in her spine, abdomen, pelvis, and lungs. Many new tumors are noted in each of these regions, as well. It has seemed that her symptoms and her discomfort were progressing, but she refused to give in to them or let them rule her life. I admire her for that, and I know that many of you do, too.

The fact that you are reading this confirms that we sat down with Hannah and Haley last night to make sure that they understand this news and what it means. It was a very emotional, yet heartwarming experience that no one should have to go through. You would be as proud of them as I am to see how compassionate and supportive they were all at once. Of course, they are deeply saddened, but I find that their fortitude and optimism are inspirational.

I am so proud of them, of their strength and their ability to support and love their mother unconditionally through this protracted mess. I know that it gives Sandy strength at ever turn. Throughout this challenge of nearly three years, they have both kept their grades at their highest levels. They have followed through on every commitment to us and to each other…if you don’t count the fish tank and the litter box. They remain good, honorable, loyal friends to many and have friends too numerous to count. You are probably aware that they both maintain very high level commitments to their teams, and this commitment has never faltered. I admire them both for so many reasons, and these are just a few.

Nobody deserves to go through this, but we are. We will continue to need your help and support. I am very grateful that you are in this with us.

Where We Are and Why

I appreciate that everyone is eager to hear the news from Sandy's most recent scans, so I thought I would let you know where we are and why. She had one CT scan done on her spine last Thursday, but the remaining scans of her chest and abdomen have been rescheduled a number of times. So, we will not have a complete picture until those scans are done and interpreted.

The holdup has been with insurance approvals. Sandy's scans have been delayed for three weeks because of administrative inefficiencies. A person would think that Aetna would approve all of the scans that her doctors order if they approved any, but, as we are reminded throughout this process, there are a lot of left hands that just don't seem to know what the right hands are doing. Adding to the complexity is the fact that, although Hopkins and Aetna participate together (ie, Hopkins is "in plan"), the radiology service at Hopkins is not an approved provider by Aetna. Go figure. This requires that Sandy actually go to a third party, a dedicated radiology service, that is approved by Aetna. That's right-- the low bidder. Naturally, their systems do not talk to each other, the data is shared in paper report format via fax, and there are delays in collecting and interpreting data. Amazingly, requests and approvals such as this are handled manually and often take weeks to settle. Different systems on either end, the output from which are paper documents that have to then be sent via fax...and then processed manually into another system. Further, the radiologist who reads the images is largely unfamiliar with Sandy's case and inexperienced with this rare form of cancer, particularly in this setting. This ultimately compromises and delays patient care, whether it is Sandy's case or someone else's. Health care decisions and the execution of treatments can be confused and delayed simply because the ideal resources are not properly aligned and integrated.

To combat the lethargy of the system, we have worked out informal processes with the individual physicians. I think many patients come up with something like that that suits their needs and personalities. The vast majority simply wait to be told what to do next. Our approach speeds time to information for us, but it does not actually improve care or save time for the physicians or the system. It introduces new inefficiencies that, if fully analyzed, probably cost the insurer and the medical institution more money than they realize.

I am reminded almost daily that in our medical system, no party owns responsibility for the overall process of managing cases. In the business world, leaders would never allow business processes to go unmanaged like this. Yet, that is exactly the type of system we rely on for medical care. No process management, no case management. Simple fee for service. Crude performance measurement, at best. Health care attracts billions of dollars in research funding each year, which remains focused largely on diagnostic technology and treatment of specific diseases. Billions more are wasted each year by pushing funding and new advances through the same, wasteful processes.

"Enough already!" you say. So where does that leave us with Sandy? Actually, she is finally getting the remaining chest and abdomen scans today. She has another spine MR ordered but not yet scheduled. It is virtually guaranteed that the process of simply gathering the data that needs to be analyzed will take more than a month to execute.

So, now you know where we are and why. Stay tuned.

Randy's Last Lecture Now A Book

On Feburary 12th, I posted a link to Randy Pausch's "Last Lecture" on YouTube. For reference, that link is http://www.youtube.com/watch?v=ji5_MqicxSo&feature=related

If you have not watched it, I beg you to make the time. It is all at once thought provoking, balancing, compassionate, motivating, and humorous.

Many, many of you responded with your comments about how moving Randy's talk was for you. One friend of ours here in Baltimore even knows Randy and and his family and is experiencing his story first hand. Another had already purchased several DVDs of the lecture, simply knowing that one day, someone might appreciate being able to see it. A handful had already seen the video on YouTube, and many more viewed it for the first time after seeing the link on this blog.

Since that post, I have seen the mainstream media picking up on Randy's story. It has been featured on local and national news. Diane Sawyer has aired a prime time program featuring Randy Pausch, multiple internet media have reported on it, and, of course, it has taken YouTube by storm as one of the most viewed videos ever. Who says that YouTube is just midless junk for kids and Jack-Ass wannabes? (not my freinds at Google, that's for sure!)

Given the response, I thought you would appreciate knowing that this lecture is the basis for a new book. The point of this post is to tell you that the book has been in the works and is due to be released shortly. It will be available at major retailers like Borders and Amazon in about a week. For more information on the book and availabilty, here is the link on Amazon:

http://www.amazon.com/Last-Lecture-Randy-Pausch/dp/1401323251/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1207835649&sr=1-1

Spring Island, South Carolina

View from the back porch (left), and here we are, arriving at Frogmore International Airport (right). A trip made possible by a very generous gift from the Solows.