Proof of life/an update

Zorak

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Jan 8, 2010
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(apologies for any obvious typos, or glaring errors as I dictated most of this on my phone :))

A brief update on my health. For those of you who didn’t know, I was diagnosed with bile duct cancer back in August. I have endured about six weeks in hospital/nursing care since, including one 4 week stretch between Piedmont Hospital in Atlanta, and a rural nursing care facility nearby, I’ve been home since mid October.

I’ve also endured two major surgeries, in addition numerous smaller procedures. The first major surgery was a partial liver resection, where they removed anywhere between 2/3 and 3/4 of my liver, Plus some rerouting of stuff in my abdomen so my body will function “normally”. Several days after the first surgery, my temperature started skyrocketing, my blood pressure was off the charts and after some scans It was discovered that the work the surgeon had done, was failing, and where the work connected to my body had in the surgeon’s words disintegrated (which my surgeon had never seen in anyone who hadn’t endured a lot of chemo, which I haven’t yet). I had an emergency surgery to take care of this, and there was actually concern that I wouldn’t survive the surgery, or the next couple of days afterward. At least one surgeon on the team told me directly and after the fact that I was lucky to be alive. (there are, of course many more details of this, I really only scratched the surface)

Now the actual follow up:
At a monthly follow up appointment in December my surgeon had a reason to believe that my body had reconnected itself, which he, the chief of liver transplant surgery at Piedmont in Atlanta, had only seen/heard of once, and only in a child, certainly no one my age (38). He ordered some follow up blood work, and scans. We had the scans on Monday at a radiologist here in Athens and initial review indicated that it looked like the connection had indeed rebuilt itself. The surgeon called us on Thursday morning, and confirmed after further review that indeed the connection had remade itself. He was speechless, and had no scientific/medical explanation as to how this happened, much less in someone my age. My body is apparently healthy enough, even with the cancer, to be able to heal itself and pretty quickly too since we suspect it healed it self by the time I got home in mid October, a month after it disintegrated.

I still have a long road ahead of me with chemo, radiation, and whatever else to fight this cancer, but things like this week, are real encouraging for me that I can fight this.
 

TIDE-HSV

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Oct 13, 1999
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(apologies for any obvious typos, or glaring errors as I dictated most of this on my phone :))

A brief update on my health. For those of you who didn’t know, I was diagnosed with bile duct cancer back in August. I have endured about six weeks in hospital/nursing care since, including one 4 week stretch between Piedmont Hospital in Atlanta, and a rural nursing care facility nearby, I’ve been home since mid October.

I’ve also endured two major surgeries, in addition numerous smaller procedures. The first major surgery was a partial liver resection, where they removed anywhere between 2/3 and 3/4 of my liver, Plus some rerouting of stuff in my abdomen so my body will function “normally”. Several days after the first surgery, my temperature started skyrocketing, my blood pressure was off the charts and after some scans It was discovered that the work the surgeon had done, was failing, and where the work connected to my body had in the surgeon’s words disintegrated (which my surgeon had never seen in anyone who hadn’t endured a lot of chemo, which I haven’t yet). I had an emergency surgery to take care of this, and there was actually concern that I wouldn’t survive the surgery, or the next couple of days afterward. At least one surgeon on the team told me directly and after the fact that I was lucky to be alive. (there are, of course many more details of this, I really only scratched the surface)

Now the actual follow up:
At a monthly follow up appointment in December my surgeon had a reason to believe that my body had reconnected itself, which he, the chief of liver transplant surgery at Piedmont in Atlanta, had only seen/heard of once, and only in a child, certainly no one my age (38). He ordered some follow up blood work, and scans. We had the scans on Monday at a radiologist here in Athens and initial review indicated that it looked like the connection had indeed rebuilt itself. The surgeon called us on Thursday morning, and confirmed after further review that indeed the connection had remade itself. He was speechless, and had no scientific/medical explanation as to how this happened, much less in someone my age. My body is apparently healthy enough, even with the cancer, to be able to heal itself and pretty quickly too since we suspect it healed it self by the time I got home in mid October, a month after it disintegrated.

I still have a long road ahead of me with chemo, radiation, and whatever else to fight this cancer, but things like this week, are real encouraging for me that I can fight this.
That is terrific! On a much more minor scale, I have had stents placed in both my main left anterior descending artery (AKA LAD - "widow-maker") and my right coronary artery ("RCA"). The RCA was very calcified, so, when a bypass became necessary, they bypassed the LAD with my left interior mammary artery and the RCA with my saphenous vein. After six months, they did a followup cath, because of my history. Lo and behold, the RCA, once called a "concrete tunnel" by the cardiologist, in mid-cath, had totally opened up and taken over from the graft, which had withered away. I do attribute this to taking vitamin K2, in a particular form, which has distributed calcium back to my bones, rather than my arteries. My carotid arteries, partially clogged, have now gone several years with the occlusion stopped in its tracks...

NIH

 
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Zorak

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Thanks all! Yeah it was pretty harrowing for a few days there, mostly for my wife and sisters (one of whom was in the room with me when I started tanking and was rushed to the OR). There were several times over that month that I didn’t think I’d ever see home or my children (5 and 3 years old) again.

Yet here I am a couple of days after Christmas when several old college buddies (all from Bama) came to visit. Took them on a tour of Athens and UGA, we’re obviously at Sanford Stadium here. I’m 2nd from left with the Alabama pullover and a white bag attached to waist. (Had a large and deep wound that needs a wound manager until it closes up entirely, about another month now I think).

987EC93B-5CAF-4338-AEB3-F670DA91E443.jpeg
 

Zorak

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Jan 8, 2010
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Another update.

Health wise: Had a CT scan last Monday that was unremarkable (that’s good). There is a 6CM pleural effusion that will be drained on Friday morning (15 minute outpatient once they get rolling). It doesn’t appear to be, directly at least, cancer related. Docs think it’s related to drains I’ve had removed.

Life wise: We’re moving to Florida week after next. Our landing spot will be Orlando (near Winter Park) with a 3-4 week layover in Gainesville with my in-laws while we have some remodeling done at the house we’re buying. We’re moving so we can be close to family while I continue cancer treatments. We’ve had great support here with our church but there’s something about the support from family (and a Latino family at that) that will give us that 3am support that we need that we can’t rely on from our church family, as great as they’ve been. Mrs. TiA’s sister lives in same neighborhood we’re buying in with her husband and 1 year old daughter and her parents (both state employees) are looking at employment opportunities in Orlando too. So looks like I’m becoming a Florida Man. Might change my username to that. :)
 

Zorak

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Jan 8, 2010
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I grew up in Lake Mary but spent lots of time in Winter Park over the years. Great area, you'll love it there!
I’ve spent some time in Winter Park over the years. When Mrs TiA and I were dating she worked a day a week in WP and whenever I visited her (we dated long distance) I’d go in with her and spend the day in WP.

Our house will be about 10 minutes from the center of WP.

Awesome. Have you bought a lottery ticket lately? With a streak of luck like that, you might want to.
I actually think my surgeon suggested that on a follow up visit. :)

Procedure went well yesterday. There was a clerical error that had to get straightened out and it had to be done by CT under sedation instead of US with local. Still groggy and sore but otherwise fine now.
 

Zorak

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Update: had a follow up meeting with my oncologist today to review CTs and blood work. The big thing is I have some borderline enlarged lymph nodes. Could be just inflammation could be cancer related, so he ordered a PET scan soon with a follow soon afterward. Will need treatment if those show up cancerous. A few other things he saw he wasn’t concerned about (like a mass on my liver which he believes is scar tissue). All told, the appointment was actually better than I thought going in. Lesson learned... don’t use “Doctor Google”. (I saw the radiologists report from the CT before I needed to).

Overall I’m feeling pretty well. Weight is actually creeping up again (finally!) and everything else I can see looks normal. I’m tired a lot but when dealing with liver issues that’s pretty normal. Oncologist is pleased with that because whatever is inflaming my lymph nodes isn’t impacting my overall well-being.

For the praying ones out there pray my body can hold tight for now and heal some more before I start any inevitable treatment (which might include a clinical trial)
 

GrayTide

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TiA, I apparently have missed this thread, but wanted to add to what others have said. You have been through some scary times and it looks like your surgery has you headed back to, at least, a slow recovery. I will add you to my prayer list. Those of us who have faced adversity and loss know that it will challenge your faith, but it is, in some cases, your best hope. Keep us updated. May the presence of our Lord keep you on the road to full recovery.
 
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Zorak

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Jan 8, 2010
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Another quick update here, just so everyone knows how I’m doing. After a pet scan, it was discovered that my cancer come back. This is not unexpected, mine never really goes into remission. While we were deciding what to do as far as treatment, my oncologist discovered that my cancer has a particular genetic mutation which qualifies me for clinical trial of a immunotherapy treatment. (He sent back to Atlanta for samples of the tumor a few weeks back). My oncologist was really excited, because he thinks that I should respond pretty well to this. While medically speaking it’s still chemo, this one is more like a tactical nuclear strike on the cancer cells rather than just blasting my system with an H bomb.

I have a port placement procedure on Monday afternoon, then my treatment starts Aug. 4. (The day after my daughter‘s birthday, because last year is when I was finding out I was sick, and was physically present at her birthday party, but I wasn’t really emotionally there)

Physically, I feel as well as I have in over a year now.
 

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