Thursday, March 12, 2009

Health Update and Comments on MD Anderson

I'll start off today by asking you for a favor. A lot of you have my email address, it is readily available in my blog profile. I always appreciate hearing from you. My favor is that you post comments, when you feel like it, on this blog. It is set up so that you can do it anonymously thereby avoiding the need for yet another ID and password. I'd like to experiment with trying to create a blog community. Thank you. I may change my mind on this, but I'm thinking it may be a fun and useful experience.

I spent a full day at the cancer center yesterday. I arrived at 5:50 AM, had blood drawn at 6:20, a chest x-ray at 6:50, an IV inserted at 7:30, a H&N CT at 7:45, a chest CT at 7:55, a dental oncology visit at 9:00, a surgery follow up consult at 11:00, a supportive care consult at 1:00 PM, an oncology consult at 2:00, and a return to the dental oncology unit at 3:00. I left the hospital a little after 4:00 PM. It was a productive day.

The 2 dental oncology visits took 3 hours in total, no waiting involved. They worked on shaping and finishing a new mouth prosthesis device fitting it to plug the unique defect in my soft palette. I’m wearing it now. Its like getting new braces; it will take a little while to adjust to the feel and fit. I’m encouraged by the early results however.

I measure visit productivity as the time when I’m being seen, examined, or tested (the numerator) by the total time I am at the hospital (the denominator). I don’t use a stop watch to perform this measurement, but I’d guesstimate that yesterday was 70% productive. I’m also guessing that my average visit productivity is around 15%. Visit productivity has no linkage to actual heath care quality. It does however have a high correlation to my (and by a loose interpolation to) patient satisfaction. 15% as an average is pathetic, 70% is off the scale incredible.

My clinic visits involve a great deal of questioning, answering, general catch up, probing and listening with different medical devices and fingers, and in the end an assessment. In summary, my doctors thought I looked well, they did not see or feel any areas of concern, and my oncologist thought I was tolerating my daily chemo pill so well that he left me at the highest recommended daily dosage. I was okay with that. My chest CT had been finalized by a radiologist and showed no evidence of metastatic disease (i.e., no lung cancer). That was a relief after the concern identified by my primary care physician last week. Better safe than sorry in my opinion. My H&N CT will take a bit longer to interpret. With all my surgery-induced scar tissue, a CT with contrast is a good tool, but not a great tool at identifying new cancer growth. Unfortunately for me, it’s probably the best tool available. It will be a few days before I hear back on the test results from this CT scan. I'll post the results when they become available.

My cancer center, MD Anderson, has been rated the number one cancer center in the US for the past 4 out of 5 years. Although my visit productivity value may be low, the quality of care is incredible. They go out of their way to look holistically at patients. There is amazing collaboration among the doctors and the departments. A surgeon won’t feel good about performing an amazing surgery if the patient later dies because the cancer came back elsewhere and finished the patient off. They are also mindful of the quality of life and embed that into their ongoing care. I’m not that happy with some of my surgically-induced changes, but I give my surgeon and his team (assistants, researchers) an A+ along with my oncology doctor, radiologist, supportive care doctor, and dental oncologist for allowing me to get this far, regardless of what happens in the future. One other thing that impresses me about MD Anderson, they have procedures in place and they follow them. They may not make sense to the layman, but I have little doubt that they are there for a good reason and as odd as some of them may seem, they save lives and deliver the best cancer-related health care available in this country.

Take care of yourself. And remember, comments are welcome. A story about yourself, a comment on the material in the blog, or something as simple as a hello are welcome.
================================

Added at 3:00 PM on 3/12/09

My oncologist's Physicians Assistant called with an update on my H&N CT. There is no evidence of disease shown in the H&N CT. That makes it 17 months with no evidence of disease.

38 comments:

Anonymous said...

Hello -- And Questions!

1. Yes, a leading guilty party will change and post to your blog.

2. Wow! Is this schedule on kind-of-a "regular" basis? If so, is there a time limit?

3. Will the prosthesis improve speaking, breathing, and eating?

4. Wow, again. Why was this a 70% day ... your doing scheduling-wise?

5. Is anyone trying to improve H&N CT?

6. Re: MDA, Have you seen an improvement in quality of care over the two+ years?

7. Isn't it "wonderful" (ha! ha!) that MDA and you are so close?

In closing, I don't think anybody would be surprised: my best news this year! Phew ...!

Anonymous said...

Hi Ed,
As usual when I saw your email, I said I missed Ed again. I was in meetings all day yesterday but I see you had a long day here yourself.
Always in my thoughts and Prayers
Stay Positive

Anonymous said...

Ed:
Your list of all the tests and consults and such......yikes! You must be a very patient man. But it's always good to hear the bottom line......that you're still cancer free. My best to you as always.

John in Pensacola

Anonymous said...

Hello Ed,

I found your blog through Leroy Sievers blog in 2007, and I've been lurking ever since. My dad passed away from cholangiocarcinoma in October 2007 only 12 weeks after diagnosis at the age of 70. I still miss him every day.

I appreciate your analytical approach to tracking your care and progress - I guess it appeals to the computer programmer in me.

I cheered this morning when I read your news of being NED. I'm sorry I lurked so long, and didn't comment earlier. I'm wishing for the best for you and your family,

Rae
Cape Girardeau, MO

Anonymous said...

great news on your day out....now to get you back out on the golf course....jay

Anonymous said...

Hi Ed,

The word "Ned" must sound so beautiful to you. If I was going to have any more children, I'd call him or her Ned or Nedine in your honor!

In terms of the depression, I highly recommend better living through chemistry (ie, medication). Even if temporary, an anti-depressant can get you over a hump and allow you to work through issues. For me, it just keeps the bad feelings from playing over and over like a broken record. They come - but I am able to let go of them more quickly and get on with my life!

I am so happy for you and hope your spirits will lift very soon.

Love,
Your s.i.l. Janice

Anonymous said...

Hi, Ed. Your news continues to sound great. Will the prosthesis help you: 1. Speak more clearly 2. Eat solid food more easily 3. Breath more easily????

Will you be ready for the trip to the North East with your daughter and friends?

Talk with you soon, Jerry

Anonymous said...

Hi Ed,
So happy that you are NED. Hoping and praying it will last with a good quality of life for many years to come. Get back out on the golf course and have fun! We're working daily on solutions for any g-d forbid future visits.
your (parents') friend,
Susanne in Pittsburgh

Anonymous said...

Wow, I love good news. Congrats, Ed!
It sounds like Houston (MD Anderson) should be the destination if I (or my husband) get cancer. However, from your blog, it seems that you have acted extremely well the role of patient-who-takes-an-active-role-in-their-care.
I have learned about many interesting medical issues and technology from your blog. Does anyone have advice/experience on what works best for them to get the most from thier doctors?

I like your "motto", "Stay Positive / Remain Healthy", sometimes easier said than, done, but it's worth a try :)
Clare

Anonymous said...

Ed,

Congratulations, it's wonderful to hear this news. I do follow your blog and am glad to hear this great news.

Good luck as you continue your journey - - stay well my friend.

Warm regards,

RW

Anonymous said...

Note to my brother...

What fabulous news. I am so happy for him, for you, and for his family. His blog is inspiring. What an incredibly brave and intelligent way to muscle through this frightening experience. I hope he continues to receive positive news like his recent entry reflects.

Now, this blog is a great use of the Inernet. Finally found one!!

Mary

Anonymous said...

Note to my brother...

That is wonderful news. I have such admiration for people who fight as hard as Ed has had to fight---and I always wonder if I would have the strength they have shown.

Enjoy the weekend---lots of WBC and basketball coming up for me.

Christina

Anonymous said...

Ed,

Just as you said, 17 months ... and counting! I hope you'll never tire of getting this result over-and-over again!

L Dad

Anonymous said...

Ed

We're at sea enjoying Spring Break.

We are both thrilled to hear your wonderfule news. You are the poster child for managing one's own health care!

Write a book!

Stay well,
TM

Anonymous said...

Ed,

At my age, and as I am such a source of infinate wisdom, I find it strange and facinating as to how I connect with some of the people in my life. Perhaps, one day on the golf course, we will share. For now, I wish to tell you that your blog aond communciation have allowed me to share in your life. And, I so seriously appreciate it. So, that being said, if you don't call me for a tee time the next time your here, I will hunt you down. Your news is such a welcome source of hope. Seriouly, I make the best milkshakes in the world. Wanna try one?

Jack

Anonymous said...

Hi Ed,

This is fantastic news! I am so glad to hear about your recovery...

Best,
Marianne

Anonymous said...

Hi, Ed.

This is GREAT news. You are amazing and never have given up, despite your procedures. Great role model for all of us and IT HAS PAID OFF.

Now, time to get on with life---huh? More golf!!!! Yeah!

So glad you are "cancer free" after 17 months. That is just great, Ed! Life goes on, huh?

RT

Anonymous said...

Ed
I am so happy to hear the good news...

God Bless
Lalji

Anonymous said...

Dear Ed,

How nice of you to send us this information. I don't really stay in touch via your blog but hear repoorts from your dad from time to time. But this is great news - no evidence of disease! Wow!
Keep up the good work and best wishes to Cathy.

Millie

Anonymous said...

Great news, Ed. You have to know you are a strong person. Congrats.

Mark

Anonymous said...

Ed -- I am so happy for your good news. Having glimpsed into the world of this disease through my father I am doubly appreciative of any progress great and small to move towards a life without it. Thank you for sharing! Christine

Anonymous said...

Ed -- I am so happy for your good news. Having glimpsed into the world of this disease through my father I am doubly appreciative of any progress great and small to move towards a life without it. Thank you for sharing! Christine

Anonymous said...

I am so happy to hear that you are doing well.
Good for you!
All the best. Amy

Anonymous said...

Yea! So glad to see this email! Thanks for the update and for such good news. I think of you often. (Who knew that our client would spawn something good (like a friendship))? :)

Pat

Anonymous said...

Hi Ed,
Great great news about your health!

Best, Peter

Anonymous said...

Ed,

Great to hear your good news.

JL

Anonymous said...

Ed,
I will have to catch your latest entry, I am so happy that all was good. I am always interested in hearing how all is with you and hope that you work your way through the various stages. I know how easy it is to stay in the current routine and how difficult to shake yourself out of a rut.

JW

Anonymous said...

Ed-
very good news- glad to hear it-
Fran

Anonymous said...

Ed,

Thanks for including me in your most recent e-mail. You are a true survivor. Peter would be proud.

Josh

Anonymous said...

I am so delighted to hear from you. I ask about you often, and keep you in my prayers. I hope your good news continues - and that you and your family are victorious in your battle!

Linda

Anonymous said...

Ed: Good news indeed!

Take care of yourself,

Prudence

Anonymous said...

Wow Ed this is terrific news!
All the best to you and your family.

Yvonne

Anonymous said...

Ed we are so happy about this news.

Lovissimo

MA

Anonymous said...

Fantastic news!

Steve

Anonymous said...

I think of you and check your blog frequently. You inspire my work. Now, if I had funding for our studies to further our findings of how to reverse resistance to therapy in our head & neck, ovarian, and lung cancer cells, I would be cooking with gas, but right now, all we do is write grant proposals.

SG

Anonymous said...

Thanks Ed

Great news - thanks for keeping me posted. I tried to find you blog spot a couple of weeks ago & couldn't get to it. Guess I am not that electronically astute!

Things looking up all over!

Sincerely
DK

Anonymous said...

Hi Ed,

It is always great to hear from you, even though we do such a lousy job of replying and staying in touch. We are very happy that you are continuing to make tremendous progress and wish you the best.

With warmest regards,

B & A

Anonymous said...

Ed:

Thanks for the update and the great news. The comments are interesting also. I suggest you post more often to your blog.

Perhaps you should ask people what they want to hear about from your perspective, and you can answer their questions. That may generate some discussion for this blog community.

Here is a question: What advice would you give to someone who just learned that they had cancer? I don't know if you feel like answering this question, but I bet people would be interested in hearing your thoughts and that may also generate some discussion.

Take care.