the status of things

This is a liver with NET mets removed for transplant. You think this liver looks bad? Well, mine is worse with a few more bigger ones.

The much promised medical update is here… So you ask, what is going on? This is the short SHORT watered down version:

Well, a few weeks after my visit with Dr. Shafir, I canceled my surgery at Mount. Sinai. After some consideration, I decided to seek further opinion from other surgeons. Something about the surgery in NYC didn’t sit well with me. It seemed like a wet band-aid that would just slip right off. I’d have to go through a serious surgery only to have a bunch of cancer still left in my liver (alive and dead crap floating around like space junk). Yes, at first, I was ready to rock and roll and thought the NYC surgery was the absolute best course. As it turns out, I’m still learning. And one thing I’ve learned along the way is that my disease is much worse than I let myself believe. My liver is a mess and it’s not going to get any better from a little RFA or Y90 here and there. Actually, there is much more disease than previously noted. (about 34 tumors total with some that are really big and in bad spots… and one near my IVC which is really not good.) Often, there is more disease that does not show up on the scans. And therefore, I recognized that I needed to do something radical or, nothing at all.

And so, as noted in previous posts, I met with the doctors at Northwestern and the University of Wisconsin (UW) again. I consulted with Memorial Sloan Kettering (MSK), with a final visit to The University of Nebraska Medical Center (UNMC). At Northwestern, I didn’t get very far so looked toward other institutions. Yet again, I was very impressed with UW and the surgeons I met. Dr. Winslow (Liver Surgeon) and Dr. Chen (GI Surgeon) were awesome. After countless hours of discussion, Dr. Winslow suggested that a liver transplant was the best option for long term survival. She explained it as “trading up front risk for long term benefit…” The transplant option has been discussed from the very beginning and it seems like it keeps cropping up. Typically, they do not give transplants for metastatic cancer. However, evidence is showing that this is a viable option with very good results. A recent example is Steve Jobs, who just had a liver transplant for liver mets from NET. My problem is that that I have a ton of tumors in my liver in really bad spots, which makes a conventional resection more difficult. UNMC offers a staged resection, but from my consult yesterday, it is unclear if it will work. At UNMC I consulted with Dr. Botha who is a well known and talented surgeon. He is also just a cool, straightforward and well informed guy. Dr. Botha, as well as Dr. Winslow, have clearly expressed that my long term prognosis in my current state of disease is not good. While other Carcinoid patients may live 10-30 years, this is apparently not me. (Sure, it’s possible, but not likely without aggressive action.) Those who live longer typically do not have such a large tumor load in their liver. Basically, the numbers are not good once you have extensive mets to the liver… and with the number of tumors I have, it’s just a matter of time before it spreads to my lungs, bones, thyroid, brain, etc… It’s shit, to say the very least.

My options are limited…. I am not thrilled about a transplant since it presents a host of other issues. Dr. Botha has suggested that we can try staged resections, as I’ve mentioned before. In this procedure, there are two liver surgeries. In the first surgery, we would tackle the left lobe of my liver. In this first surgery, the surgeon would resect 6-8 tumors in the left lobe and cut blood supply to the right. A small piece of the left lobe would remain, which would eventually grow to become my new full liver. They would also look for my primary tumor and remove it if found. In 4-6 weeks, there would be a second surgery, in which the entire right lobe would be removed. The success of this surgery hinges on two factors:

1. Upon entering on the first surgery, what we see from scans has to resemble something close to the real condition. That is, we think there are 8 tumors that we can see from the scans. If you get in and there are actually 14 or 18 in the left lobe, it may not be possible to remove them all, in which the surgery would be aborted.

2. Assuming the resection in the left lobe is successful, the remaining liver fragment has to show that it is growing prior to starting the 2nd surgery. If the liver doesn ’t grow, which doesn’t happen often but nonetheless possible, the 2nd surgery cannot go forward.

If either of these things were to occur, the staged resection would be a failure. In which case, the next option would be a complete liver transplant. Dr. Botha, in his opinion, felt that a transplant might be the best option (60/40), but willing to give a crack at the resection if I’m willing. In some cases, a transplant would actually be an easier surgery. However, once you have a transplant, you have to deal with immune suppression drugs and an altered lifestyle. Also, there’s a 10% chance the transplant will fail in the first year. However, success rates with transplants are very good for someone with my overall good health. Furthermore, a transplant would be a complete cure (if the primary was found). Dr. Botha thinks that I could get on the donor list, and from his experience, raise my list number and get me a liver in 3-6 weeks. The resection is a hard surgery, carries similar risks, and a high 80% chance of recurrence. However, it would be my liver. Even if there were a small occurrence in the future, we could then use RFA, etc. to address it. The resection surgery would still drastically prolong my life. The major upside to a resection (as opposed to transplant), is that I would still have a transplant as a back-up. With all that said, it’s clear that my options are:

1. Do nothing, accept my fate, and die earlier than I wish to (whenever that me be). And I don’t do the GOD stuff, so that would basically just suck for me.

2. Do a half-assed surgery which yields little result and still die earlier than I wish to.

3. Try a serious surgery (staged resection) that may prolong my life greatly, but may also not work at all on the first try… upside, primary might be found.** A note: Yes, you can die from these surgeries. 1% chance, but if you’re the 1%, you still die.

4. Do a transplant. Downside, big risk upfront, but potentially a cure which will certainly extend my life (assuming a bus doesn’t hit me…) And yes, people do get hit by buses and we should not talk about that lightly. Actually, a friend of ours was hit by a bus and it really screwed her up…so, watch where you walk.

I’m going to think about it for a bit. I’m not doing anything prior to my 30th B-Day in January. I sure as shit am not going to sit in a hospital on my 30th. I am leaning toward at least trying the staged resection. The way I see it, the risk of failure is worth trying to keep my own liver… If it fails, we go transplant.

Where does this leave things for me? Well, it’s a shit storm but I’m dealing with it. Like a hammer, it hit home to me this weekend just how screwed I am. I need to take a step back and really REALLY think about what I’m doing. Maybe it’s time to change my focus from work to living? (I’ve said it before, but really… maybe it’s time.)

I want to work on my new house, because that is what I like doing.
I want to keep making art, digging for treasure, and building things… because that is what I like doing.
I want to travel, kiss my wife more, and sleep in on Sunday’s, because that is what I like doing.
I want to stop wasting the time I do have, because I do not like waste.
Not one second of it.

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