Tuesday, October 30, 2012

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.

Friday, October 19, 2012

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.


Monday, October 15, 2012

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.

Friday, October 12, 2012

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.

Tuesday, October 9, 2012

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.