Wednesday, December 12, 2007

December 13 2007

Published at 12:01 AM CST on 12/13/07.

Hi. I’ve been waiting to write about this day for the past 2 – 3 months. It has special significance to me. One year ago today I had a follow up visit with my surgeon to review the results of my latest CT scan w/contrast. The scan showed five cancer hot spots; they were all in areas which my surgeon felt were inoperable. I thought to myself, “how the hell did I get here?” Five months and one day earlier on 7/12/06 I had gone though an incredibly difficult surgery. To review the bidding, the surgery took twelve hours, removed body parts, took body parts from two places and put them in other places, put me in the ICU for 2 days where I was sure I was going to die, then another 7 days in the hospital. I had a tracheotomy for about 4 weeks (that was torture) not to mention a number of other tubes. My family and friends were incredible during my slow recuperation. Fast forward to 12/13/06, I showed no evidence of disease for five months and 1 day following that surgery. Now, here I was again! I was back in my surgeon’s office with five friggin cancerous hot spots. I asked him the question that many, although not all, cancer patients ask their doctors. What’s my prognosis? If you think about it, it’s not really the question that’s tough, it’s the answer. He said I should be thinking in months, not years. I guess that’s an easier way than saying soon. He said he had an obligation to mention the potential use of the palliatative care unit at my cancer center. I’ve written about this before, but to revisit it, that’s the unit that tries to make you as comfortable as possible until death. Cure is not their goal. My surgeon also suggested a visit with my chemo doctor. At this point in my life on 12/13/06, I had just begun getting my life back together. My speech was coming back strongly, my strength was back due to an aggressive workout program, my golf game was beginning to improve, and I was considering going back to work in early January. I deluded myself into thinking that I was actually going to escape and leave Cancer World behind. Good bye and good riddance. I had been told once before that I had a few months to live. That was in June 2006 when my surgeon said that without the surgery, I would die before yearend. By our conversation, I could tell that he believed it would be significantly before yearend 2006. With the surgery, there was a 15% chance of a cure. I left my surgeon office on 12/13/06. Given the odds, I was disappointed, but not surprised. I then met with my chemo doctor that same day. It seemed like a better choice than the palliative care unit. On 12/20/06, I began my third cycle of chemo. Chemo continued for almost 9 months until 9/12/07. One might think that I have to look these dates up, but I don’t, they are etched firmly in my mind. The chemo was brutal during about 50% of this time. Fatigue was the primary culprit. Limb numbness was also high on the list of why one tries to stay healthy and avoid chemo. I had six different cycles of chemo during this timeframe (dozens of rounds) and they were successful for the most part. In June and in October 2007 I had two more surgeries to remove new cancer growths (they were not part of the original 5 hot spots that were on the scan on 12/06). The surgeries weren’t trivial, but certainly not on the scale of the one on July 12 2006. It’s been a rough 12 months. I’ve tried putting my energy into being a good father, being more generous, and keeping myself healthy. Some of these goals have been more successful for me than others. I’m glad I’m still here a year later. I’m happy for the family, friends, doctors, care givers, and researchers that have stuck by me. THANK YOU again and again and again, I couldn’t do it without all of you. I’m hoping this new chemo regimen that I began yesterday will result in a cure. On paper it shows promise for my specific disease. Hope is key to cancer patients that haven’t given up. I hope this coming year is a bit easier than the past 12 months and I hope I’m here and feeling well on December 13 2008 so that I can write this story all over again one more time.

Take care everyone.

4 comments:

Elizabeth said...

congratulations and best wishes and love to you.

Sheara said...

Hello Ed, I am one of the posters on the Leroy Seivers blog. I read your post today, and finally am taking the time to check out your blog site. First, I want to say what a positive and strong man you are in all of your health efforts. I wish you the best outcome in your latest treatment...to include your posting one, two, and more years from now.

Second, I wanted to offer my experience with Avastin. I was dx in March 07 with stage IV ovarian. My docs immediately refered me to Dana Farber. The PET scan looked like a Christmas tree. I knew that major surgery was the first step. One met, behind the abdominal wall wasn't operable. I wasn't sure what might be offered next in the way of new therapies; but, I knew I was in a place where I had a running start on exploring cutting edge options. Not coincidentally, my surgeon got me right into see a gyn medical oncologist on the team who was running a phase 2 Avastin-with-standard-chemo clinical trial for initial/primary treatment; and I signed right up. I figured that the odds of survival with the Avastin side effects were still better than the ovca stage IV survival statistics to date. The Avastin portion began concurrent with chemo cycle 2...continued with my remaining 5 chemo cycles...and then again every 3 weeks for a full year after the completion of chemo. Altogether, I had 23 Avastin IVs. I'm happy to say that so far, so good. I have been NED since last March; and I've outlived the mean time to recurrence for my initial diagnosis. My oncologist tells me that the initial indications for this trial have been very good. I go in for my first three month follow-up in early January.

Since you are having fewer cycles of the Avastin, the side effects might be less of an issue (I hope). My biggest side effect was a rise in BP and headaches (They're related); but those were controlled by atenolol, nortiptylin, and Tylenol. I was not permitted to take ibuprofen with the Avastin, which would have been preferred. I think that the fatigue and lethargy I experienced was more a product of the atenolol and nortriptylin (along with weight gain)...as I weaned from the nortriptylin, I felt better within a matter of days. In the physical activity arena, I also had to be much more careful. I had worked back up to taking daily brisk four mile walks, and a bit of Pilates. But, eventually, I needed more time for "recovery." I guess that this comes from the Avastin's inhibition of forming new microscopic blood vessels throughout the muscles and joints. It just takes longer for our bodies to heal while taking this treatment. It wasn't in the cards for me to resume vigorous physical activity quickly (although I did go to Vermont and ski for a few days last Feb.;-) I've found that yoga and tai chi four to five days a week are very helpful with maintaining both flexibility and strength. There are lots of very fit men in those classes, too. I'm just starting to try and go back to some cardio. It's hard to pace myself when I'm anxious to get rid of the weight gain, too.

So, that is one data point for you. Avastin might or might not be the miracle drug for us; but, it's a damn good placeholder, at the very least. If you ever do end up at near Dana Farber, and there's any help I can offer you or your family --- definitely ask me.

Again, wishing much health and happiness through the holidays and the coming year - to you and your family.

justme519 said...

Dear Ed, CONGRADULATIONS! What a milestone. I hope that your feeling ok after your tx. yesterday. Thanks for sharing your story! Be Strong, Tanya

prudencep said...

Ed, I have been following your progress with much hope. Your courage and tenacity have been nothing short of stupendous and amazing. But then I would expect that from you. We miss you very much here, especially this time of year with your and Alexis' annual delivery of homemade Christmas cookies (which were half eaten before you had even made it down the driveway!) I hope that you will be coming "home" soon so that I can hear your infectious laugh once again! I have admired you, Ed, for your accomplishments but mostly for your loving care of Alexis. We have you in our thoughts and, yes, in our prayers.