According to schedule

Today is my last day of chemo before taking a week off to prep for the SBRT radiation treatment I'll be doing in order to both kill and shrink the tumor that's wrapped around some of my critical blood vessels. The plan is to get the tumor to move back from some of the vessels, so that surgeons (who I hope will study the scan results well before a couple days before a scheduled surgery) see less risk involved with the removal of the tumor and some surrounding tissue and organs (see Whipple Procedure), coupled with some vascular reconstruction.

I am indescribably impatient for some of this waiting and sitting to end. I am happy that the SBRT only takes 5 days (although I'm not looking forward to the daily drives to Stanford Hospital from my house), and logically comprehend that it's going to take 4 weeks to wait (while doing more chemo) and see the results of the treatment, but emotionally I'm fucking done with this waiting. I want to get back to my life.

I wish I could just duke it out with this little bastard, and rub its mindless little face in the dirt, and then walk away - keeping this entire experience in perspective, of course. When I think back to some of the things I used to stress about, I could slap myself. I'm looking forward to days where I get in a sticky situation, and say to myself, "If it's not cancer, then chill for moment, and we'll figure this bitch out. It's not that serious."

I never thought I'd need to deal with applying for short or long term disability, COBRA insurance, or worry about pre-existing conditions when considering future medical coverage, and now I find myself on the front lines of it all, coupled with the fact that I've got this little fucker in me, and things aren't moving fast enough for me to get it the hell out.

I am thankful for my family, friends, and relative strangers who have been unbelievably kind, supportive in ways that remind me that despite all the horror we're exposed to in the our daily lives, our humanity and compassion is uncompromising.

That being said, I plan on fighting the socio-political precursors of a potential zombie apocalypse (or in the worse case being able to fight off the infected ranks), and invite you all to join me.

For all my family/friends in the East, I love you guys. Stay safe and dry.

Gut Bling

A couple days ago we went to Stanford to talk to their radiology team again, as the next step in this lovely kill cancer process will be to undergo some fancy Stereotactic Body Radiation Treatment (SBRT). This was one of the treatments we discussed with the team at Stanford some months ago, but opted not to do it then and instead do the aggressive chemo cycles of FOLFIRINOX, which precluded doing any radiation because of the toxicity level.

The radiation is supposed to 1) kill the tumor and 2) make it shrink. The idea is to get enough shrinkage back from the blood vessels that the tumor has wrapped itself around (little fucker), so that surgery is an option once again. One fascinating aspect of the process is that before I go in to receive this treatment I have to have another endoscopic procedure to implant several gold "seeds", called fiducials, into the tumor. They seeds are about the size of a grain of rice, and are used to help deliver the radiation in a more focused manner. One of the main benefits is the treatment is 5 days, so they can determine the effects of the radiation sooner. The more traditional delivery would take 5-6 weeks.

There's some prep work that has to be done before I can go in for the actual radiation. I get my gut bling fitted next week, after that I go in for a couple more scans, then the doctors map out how the radiation is going to be delivered. I then stop taking chemo for a period of time before and after they blast me with Hulk rays. The radiology oncologist indicated that they'd be able to rescan 4 weeks after I'm dosed and then the surgeons will re-evaluate the tumor and surrounding blood vessels.

I'm anxious to get this all started, so there are deliberate actions occurring designed to fuck Toomie up and get him ready to be expelled from my body. I'm back on chemo, which has been a bit more tolerable because I'm not doing the FOLFIRINOX, but I still feel like more could be happening. I am still disappointed about the last minute decision to not proceed with surgery, as I had mentally and emotionally prepared myself for the whole ordeal, only to have the rug pulled out a mere 2 days before. I feel like the surgeons could've done their homework a week or so sooner rather than wait until the last minute. The whole thing reminds me of a college student waiting until the night before to write an English paper. I do see the silver lining in the decision: that they didn't open me up only to find out they couldn't do it.

Onward.

Plot Twist at the Ending

So I was supposed to go into surgery this Wednesday, and the surgeon from Stanford just called to say that after more review with other colleagues he's concerned that there's too much involvement with a critical artery and the vascular reconstruction would be too extensive and therefore too risky too perform. He's recommending I undergo CyberKnife radiation treatment first, which will potentially kill the tumor and cause it to shrink, after which I'd have the surgery.

It's a big shock to be sure. I am disappointed that this little fucker gets some free rent for a while longer, however, I'm glad that they caught this detail before going in and finding out only after they'd opened me up.

The plot twist is that it looks like I'll get to be Hulk after all. When I asked the surgeon when I'd go in for CyberKnife, and it sounds like it'd be this week. Fingers crossed.

This is just a quick update. I'm looking to have more soon.

The Autumn of Toomie's Content

It's two days after my stent replacement, and everything is getting much better. I'm still a little itchy, but I can tell that there are less axe-wielding Keebler-esque itch-elves hewing my flesh into itchy chunks for me to scratch, which is nice. I really have to say that the teams at Stanford are really quite considerate. When talking to the doctor who was going to perform the procedure I mentioned my experience the first time about feeling like an inner tube, and he said they'd make an effort to deflate my gizzards the best they could. I also asked him about foods to eat (or to avoid) because of the stent, and was informed that I could eat anything I pleased, which was awesome news since I've been craving salads and vegetables, and not the smoothie-fied versions, mmm-kay.

True to his word I woke up feeling a little discombobulated from the anesthesia, and totally normal from an internal psi perspective! No one could mistake me for a summer inflatable toy and try to take me out on the lake for an afternoon float, and my darling sister (who drove me down and kept me company) and I proceeded to make our exit.

I did get sick from the anesthesia, but it was a minor inconvenience. Thankfully my sister drives an Element, and she basically told me to throw up as much as I wanted because they could just hose it out like an animal's zoo pen when she got home. I opted to spare her a major mess, and used a Lululemon Poser bag to catch my boot. I can speak with empirical assuredness that those bags (yoga hipster though they may be) are nowhere near liquid proof.

When I got home I was exhausted, and caught some serious Zs. The next day I was out on walk with my youngest son, and the doctor's office called to check in on my progress. I told them that symptoms were fading as expected, and I was feeling no ill-effects from the procedure. After my son picked out a bottle cap from the dirt, and proudly displayed it.

After looking at the photo I reflected on the fact that we are changing seasons, and that I spent the whole summer treating Toomie to poison, and here we were coming into fall, and further contemplated that this was the season where the year's growth is shed and renewed, and likened this tumor to floral detritus that ends up under a log and becomes food for the worms. I'm thrilled that this is all wrapping up in 2012. I want to make this year a package deal for cancer: diagnose, treat, cut open, recover, and burgeon in newfound health.

Adding to the fun

Everything was just going swimmingly along when all of the sudden my skin started itching like it was inhabited by itch-gnomes hatcheting away at my flesh with itch-poisoned blades. "Yay!" I thought, as I plowed my nails into my itch gashes. Needless to say, I contacted the the team at Stanford, and met with them to discuss, and the thought is that the biliary stent placed way back in June is somehow "clogged", and I'm developing jaundice symptoms, so I get to have an encore performance of this awesome little procedure called an ERCP, which I originally had when the stent was first installed.

The best part of the ERCP, aside from being completely out, is that when they put the endoscope into my gullet and start poking around my tender vittles in order to evaluate the condition of the common bile duct and stent is that they may inflate my stomach and other adjacent organs with air in order to move the scope around and do whatever they need to do. From my last ERCP, I can say that this air fills me up like a beer keg, but unfortunately there's no party. This should be an out-patient procedure, and I should be coming home the same day, albeit with a slightly higher psi rating than when I arrived.

I'm not looking forward to becoming a human keg, although I am looking forward in having these jaundice symptoms alleviated because the itching is maddening. Ironically, the stent and all the plumping it's involved in will be coming out with the surgery I'm having in about a week, but if I let this continue then I'll likely start looking like a block of cheddar cheese, and have other interesting side effects like sepsis and/or renal/liver failure.

Of course, it's possible that my first ERCP wasn't 100% indicative of what every one will be like. Here's to hoping that they only need to use the same amount of air to fill up a road cycling bicycle tire, and not the volume used on a mud and snow tire.

Green light the production

Friday was a long day. The traffic was expectantly gnarly.

We went to Stanford and met up with the surgeon, after he reviewed the most recent CT scan I had. Doctors wanted to see what the status of the tumor was with regards to positioning with some vascular tissue, as Toomie is nudged up against some major veins and arteries.

The surgeon had some wonderful things to say:

1. We can operate in conjunction with a vascular surgeon as they need to reconstruct my veins and/or arteries during the procedure.
2. It's excellent news that the tumor markers decreased another 30%.
3. The Pylorus-Preserving Pancreaticoduodenectomy (Whipple Procedure) wouldn't involve removing the entire pancreas, and he'll only need to remove a little bit of my stomach (at this point, these are good things given the fact that about only 15-20% of people diagnosed with pancreatic adenocarcinoma are eligible for surgery).

He also said some relatively spooky shit:

• If the blood loss is too significant in the event there is significant vascular reconstruction during the surgery I could die.

This is the first time I've ever heard "you could die" from a doctor. I've never had any major health problems. Not even a broken bone. The extent of my surgical history prior to all this involves some stitches on some cut fingers.

During the meeting with the surgeon I indicated I wanted to proceed with surgery, so I then was told I need to do another CT + Angiogram study in order to provide the vascular surgeon some insight into my inner workings. My wife and I ended up staying around Stanford until the scan, which was scheduled for 4:30. We grabbed some lunch, where we had some fabulously presented jasmine tea.

We then popped by the Apple Store and charged our phones, browsed some nearby stores, and finally it was time to head over to the imaging center. While charging up the surgeon's office doing the Whipple called and scheduled my surgery. The folks at the imaging facility were downright lovely to work with, and my nurse was able to access my port as opposed to trying to stick me 5 times to get a peripheral IV going. I was truly thankful for this little nugget of goodness. I then ran through the scan without any hitches, and the wife and I foolishly hopped on the road at 5:20 leaving Stanford. It took us about 2 hours to get home. The trip reminded me of my former daily commute to eBay from home. Ah, glorious traffic. I love how you can take hours away from our life and ask for nothing in return but fatter guts, bigger asses, and more burned fuel. I digress.

I go back to Stanford next week to meet with the vascular surgeon, discuss the recent scan and the forthcoming surgery, and then I'll meet with some folks to "map my veins". I'll likely donate some during the reconstruction. Come mid-October I check in for operation. I'll likely be in the hospital for 7-10 days afterwards.

The date is set. It's going to be some brutal recovery, but this procedure is curative in nature. I'll need to do some chemo after I recover from going under the knife, too, so it'll be quite a journey. I'm very happy to be on this path.

Thanks to all our family and friends helping us out. We could not be going through this without your assistance and love.

Anticlimactic

Results of the CT scan were inconclusive. After walking into the doctor's office yesterday I was feeling pretty optimistic: I expected to hear that tumor markers dropped, and the tumor itself shrunk 50%. Tumor markers were good. They dropped another 30% from last time. The tumor apparently only experienced very minor shrinkage, and there doesn't seem to be the expected withdrawal of the tumor away from some critical circulatory tissue. It's hard to be definitive because the doctor reviewing the scan didn't really write it in a way that compared the size in a way conducive to being considered apples-to-apples. My oncologist and potential surgeon are discussing to see if they can get a clear picture of the state of the tumor in order to be able to determine a sound treatment plan and ultimately a surgery date.

It could have been worse: the tumor could've grown, and it didn't. There could've have been metastases, and there weren't. I am bummed that the tumor doesn't appear to have shrunk much, however. My oncologist posited that the scan looks at things from a top down perspective, so the tumor could've flattened, which would be nice, but I'm not holding my breath.

Next steps are to continue to meet with surgeons as planned. My oncologist is suggesting another procedure that would do a more definitive measurement, and I'm all for it. In the meantime though, I'm likely going to have to continue doing chemo in order to keep that little fucker Toomie bathing in poison. Lather up you little bastard. There's still a lot of ground left in this race, and I'm going to win. I might also do radiation, which is cool too. I'm still holding out on gaining Hulk powers should I end up going in to be irradiated.

There's likely to be some considerable changes in the days to come. I am not sure how this is all going to play out, and there's likely going to be some flux. We'll figure it out.

Posted with Blogsy