Like a permanent roller coaster ride – update #5

Greetings friends and family,
I hope your summer has been going well and lots of fun has been had.

My treatments have been over now for several weeks now. It was hard to image there for awhile that I could ever get back to feeling somewhat normal, but now I do. Besides all the teeth drama after a total of 12 hours in the dentist chair, (which I highly recommend not ever doing when you are trying to recover from other physical challenges), and a painful ear infection I have had for the past 2 weeks, (from diving), I am feeling peachier that a Georgia day, in comparison.

I had my highly anticipated PET / CT scans on July 29th and then met with my Oncologist to discuss the results on July 31st. Once again I faced some trepidation in getting the results. By faith I was expecting to hear that the tumor is miraculously gone, but there certainly was some fear trying to effect my emotions and get into my head as I was experiencing what seemed like possible symptoms that made me wonder if the cancer may have spread. Well, he gave me good news which was the tumor and limp nodes responded very favorably to all the treatments. The limp nodes had shrunk way down and although the tumor was still inflamed due to the recent radiation, it had reduced in size. He was recommending surgery as soon as mid to late Aug. The cancer had not spread which was a tremendous relief.

As soon as I left the Dr.’s office I boarded Ernesto’s boat for 5 days in Catalina. On the crossing I saw 3 whales spouting in the distance and a large pod of dolphins. Duke got pretty queasy but didn’t feed the fish, but little Chicka sure did. Even though I have spent a decent amount of time in Catalina boating and diving over the past 18 yrs, I felt like a kid going to his first amusement park. I was rejoicing with a very thankful heart, even while I was 80 feet deep diving & spear fishing, so thankful that I could be doing all this. It was great to sneak in an unexpected vacation for myself and with Duke. Duke cleaned his first fish and was a tremendous help for me getting on my dive gear. He manned the anchored boat while we dove and was quick to rescue us in the dingy several times as we were drifting away. Ernesto and Duke wanted to challenge my paddle boarding balancing skills when I was way out in the bay in bit of a swell. After they were unsuccessful in throwing me off by their aggressive wakes with the dingy, they actually rammed me. With friends like that, who needs enemy’s. I did receive much compassion added with many laughs from several nearby cocktailers and it provided the opportunity to meet some really nice people which was totally a divine appointment. I did have one bad day there but my chummy the waters help the guys catch 14 fish while on our mooring – that was a team effort.
See photos; http://www.flickr.com/photos/Catalina

On Aug 11th I was to meet with my surgeon to discuss the surgery, (that I had hoped to not have to have), they had me scheduled for surgery on Sept 9th. I did meet her after a 2 ½ wait and was able to avoid walking out. My pride was sure tested and I had dictated the note I was going to leave her in my mind several times. I do really like my surgeon as she has the disposition of a caring veterinarian who spends as much time necessary which each patient. She discussed in detail the procedure which I found rather alarming seeing it had to do with my internal organs, cutting and tubes and stuff. In my initial meeting with her back in May she mentioned removing the esophagus. I was hoping I misunderstood her and my oncologist had confirmed that as he described it as removing only a portion of the esophagus. If you know me you would know that I usually will negotiate when I sense variables or flexibility. The intern surgeon mentioned 75% before the main surgeon stepped in, which was alarming enough, and the surgeon actually said she would remove the whole thing to be safe. I forgot to try to negotiate but may go back.

The Esophagectomy procedure – it should take about 3hrs not including prep. They try to go in for the most part lathroscopicly (?) with 4 incisions including a 4” one in the side of the neck where she will attach my stomach to the remaining 2cm of the esophagus. They should be able to avoid the larger incision and rib breaking old school way and I am all for that. The stomach will be reshaped with staples in place of where my esophagus was with a small portion remaining in the lower chest. I know some people pay a lot of money to have their stomach stapled or banded, how lucky am I ? They will first take a camera down before they start, and will take biopsy’s for pathology testing during the surgery. They will cut away until they clear, (cancer free), margins. The esophagus tissue is known to hide small cancer cells and tumors that can go undetected, her reason for removing the whole thing. During the surgery they should be able to determine if they can remove the porta cath I had installed in my chest as well as the need for further chemo – we will see as my oncologist likes to finish with at least one chemo blast for good measure.

Recovery – I will be having the surgery at the new Ronald Reagan Hospital at UCLA in Westwood and expect to be there 8 to 10 days. They will install a feeding tube and plan to leave it for 2 months – I think so I can safely eat and drive. I should be on a liquid diet for awhile but some day should be able to eat anything I want. She will want me walking 2 days after surgery and I think if I can walk, I can certainly have a little party, so mark your calendars. Keep a look out for the e-vite, maybe it will be a theme party. I am serious, but lets not tell my mom yet. I should be able to drive after 2 weeks depending on the need for pain meds, just stay clear if you see me on the road. I will keep my hazards on. And I will be going on disability from work for 6-8 weeks. I haven’t asked when I will be able to scuba dive, but you know I will.

To be honest I left the surgeon office somewhat scared, nervous, bummed, etc…. It all sounded so life changing besides all the discomfort and pain. I had questions for God, such as; “I thought you were going to heal me ?” and “what was the point of all these people praying for me ?” . Normal thoughts, I think. It took me a few days to work through it. It was while I was making a visit to a friend from church who just had twins which were testing for hearing issues. She happens to be a nurse and reminded me besides the wonderful miracle of Maria coming into my life, that the fact I am a candidate for surgery is a miracle. I then remembered that in my first meeting with my surgeon she had mentioned that only about a third of the patients that get diagnosed with this are even candidates for surgery. I certainly took it for granted at that time that I would be one of those 33%. I didn’t spend much time thinking about the other 67% that battle and battle in chemo chairs and in the radiation center. Many whom I spent time sitting along side of and many that most of us know or have known. I realized how incredibly fortunate, blessed and how God’s grace has been upon me in many ways.

Bonus – everyday millions of people spend millions of $’s and wait for hours in ridiculously long lines to ride roller coasters. What is it about roller coasters ? Everyone knows it is that feeling of excitement and thrill that takes place especially when you go straight down and that sensation of what feels like your stomach going up into your chest from the intense gravitational pull. Well, it sounds like I am going to have that permanently built in. So if you ever see me raise up my hands and shout “Whoa Whoo !” after the simplest of task like sitting down or stepping off a curb, you will know why.

Duke is off to camp this entire week and got an extra week of summer as his new school started today. He will be attending LAB in the valley which will be a huge but great change for him in which we are all very excited about. God has come through, (as always), with a close by car pool group. The weeks of me being down will add to an already challenging schedule situation with me living on the west side and his mom now living in the valley. Please keep him and all that in prayer if you would as well as; my financial situation while on disability, and for Maria and I as we are trying to make some wonderful future life plans in the mist of everything, Whoa Who. Will keep you posted.

My work, Union Rescue Mission , continues to be amazingly supportive and gracious. Check out this great story about one of our 15 year boys at Hope Gardens. He and is family were recently homeless and he is now in the Boy’s Scout Troop we have there and was recently honored. http://www.urm.org/boys scout honored.