Epiphany

So this weekend was pretty rough. Thank God Mom & Dad were here - it definitely took Jen together with the two of them to keep me off the ledge. All the great comments from you all helped immensely too! I was pretty bummed to see that the scans were still stagnant. Even though the side effects themselves aren't bad, and I've been truly blessed in that regard, they're like a thousand cuts just annoying the crap out of me. It was really frustrating to think that the treatment was just keeping the disease at bay, not beating it.

Monday on the way to work I damn near went walkabout a la Crocodile Dundee. I grabbed breakfast at a local coffee shop after dropping the dogs off, and had an overwhelming urge to just start driving. I figured that Boston would be a good place to go, for no particular reason at all. I probably would have gone too had one of my co-workers not called to see when I was coming in.

Since we didn't talk to Dr. Donehower on Friday after the scan we sent him an email over the weekend with a ton of questions in it and asked for a meeting this week. We didn't hear anything on Monday, so this morning I called his office to schedule an appointment. I called at 9:30, and they told me they had an opening at 10. I told them no thanks, and they told me the next available appointment was 4/28. I told them I'd be there in a half-hour. Jen, of course, was at work down in Georgetown - over an hour from Hopkins. Luckily, the appointment was a little late, and Jen only missed the first couple minutes.

So the good news from the meeting was that we are still showing good progression against the cancer. Dr. Donehower did a great job of putting everything in perspective. He said that the final radiologist's report did in fact show that there was overall fewer tumors in my liver, and that the lymph nodes and primary tumor were very small. That, coupled with the fact that the tumor markers are nearly back down to normal levels, tell him that the chemo regimen is still working to kill the cancer cells. He also pointed out that the CT scan can't necessarily differentiate between active tumors and the damaged liver they've left behind. The fact that the tumor markers are so far down shows that this regimen is very effective.

That's the good news.

The epiphany came when we started talking about being more aggressive. Dr. Donehower admitted that he's very conservative, and is satisfied with the response and direction that treatment is going. His governing philosophy is that chemo is non-curative for metastatic disease, and that we need to find a good regimen that we can stay on for a long duration to postpone my death as long as possible.

Obviously, we disagree with that approach.

Dr. Donehower understands our position, and supports us getting second opinions. He didn't go so far as to recommend anyone in particular, but that's OK. We want to find a doctor with different treatment ideas, and it's likely that any doctor he recommends would follow his philosophy. I don't want to give the impression that he's a bad doctor at all - quite the contrary in fact. He has been fantastic through all our meetings and being general pains in his ass at times. He did say that now is definitely the time to do the research and get the opinions since I am doing well with the treatments and am healthy. We are going to stay in the FOLFOX-C trial for another 3 cycles at least, and we'll see what we know at that point. We're going to get back on the nutrition bandwagon, and put a renewed focus on exercise and getting my emotional issues under control.

We've seen survivor stories and talked to survivors that have seen a cure from this disease, and they didn't do it via chemo alone. To that end, we're casting a wide net to find the doctor we need to tackle this disease with some combined therapies. Jen spent the afternoon doing some research into doctors at MD Anderson in Texas and Memorial Sloan-Kettering in New York. We're also going to get an opinion from the Cancer Treatment Center in Philly. There's a stage IV survivor in Colorado, and I'd like to get in touch with his oncologist. And finally, we're going to try to talk more seriously with someone at NIH to try some new therapies.

A lot of you who are following this blog have wondered how you can help. For starters, the comments that you made after Friday's scan were so unbelieveably helpful over the weekend! Please keep the prayers and well-wishes coming!!

For some more concrete help, here's a few things you could do. For starters, if you know anyone who has successfully beaten stage IV cancer with metastases in the liver, please let us know. I hate to say this, but we don't need to know about Aunt Margaret who is still kickin it 20 years after she found a lump and had it surgically removed without much trouble. I don't mean to disrespect their stories, but that's not the same disease we're fighting. We need to know what people have done to beat advanced stage cancer. Any help on this front will be tremendously helpful!

Second, if you see a news story about a new therapy or miracle survivor story, send it our way! Any help that you can give us in finding new treatments is also very important!

So that's where we stand right now. I feel great this week, save for the depression and moping around... That aspect is much improved after today's meeting. I keep clinging to these verses from Psalm 91: Thou shalt not be afraid for the terror by night; nor for the arrow that flieth by day; Nor for the pestilence that walketh in darkness; nor for the destruction that wasteth at noonday. A thousand shall fall at thy side, and ten thousand at thy right hand; but it shall not come nigh thee. I have been healed through Christ my Savior, and we are waiting (impatiently) for that healing to be manifested in my flesh. We have no idea where these next few weeks will lead us, but we're confident that the path will be made clear in due time.

Thanks again for all your thoughts, prayers, and comments!