Under the Knife

It's been a little while since my last post, and it's now past the date of meeting with the surgeons at Stanford to see if they'd perform the Whipple. Short version is: no. There's too much tumor involvement with the vascular structures. I also have a duodenal ulcer that formed as a result of the radiation treatment. The ulcer got a bit bigger, and there's still a much narrowed space in the duodenum (because the tumor is pushing on it, thereby restricting the opening), so I've been on a liquid/pureed diet for some time now. I also developed ascites, which are fluids in the peritoneal cavity. There's a chance that the fluid might be carrying cancer cells. Without any shame I can say that I'm praying they aren't.

The good news is that I'm doing bypass surgery (gastrojejunostomy) on Monday at Stanford, that will effectively remove the duodenum from the equation, so I can eat more normal foods, and gain some weight and strength back. They'll also remove the ascites during the procedure and perform cytology on them to see if they're cancerous. The recovery time for the bypass surgery is supposed to be pretty quick (3-5 days), and directly after I'm starting back up with a new chemo regiment.

Other optimistic news is this: if the tumor and ascites (if applicable) responds to the chemo, and the tumor pulls far enough back from the vascular tissues, then the surgeons say that they will be able to perform the Whipple, and remove the tumor.

It's really been a tough time the past few weeks. Doing the liquid diet is amazingly challenging both physically and emotionally. Couple the fact that I suffer from occasional bouts of nausea makes it even harder to keep nutrients in rather than out. I really want this surgery to go well, and recover soon, so I can start back on the chemo, begin eating a greater variety of foods, and ultimately shrink and remove this fucking tumor so I can get back to my life.

This whole process has been harder than I could've ever imagined. I wouldn't wish it on my worst enemy.

Ok tomorrow...let's make this a successful surgery that leads into a speedy and smooth recovery.

My most sincere thanks and love to all my family and friends helping me and my family out. I cannot stress how much your support has made this an "easier" time. To my amazing wife: I love you - thank you for being there for me every step of the way. You are my angel and health advocate extraordinaire.

Getting *airquotes* normal

I had the celiac plexus block done on the 15th. It involved sticking two needles into my back and into what I've always heard referred to as the solar plexus. The doctor then injected lidocaine into the nerves to make sure he was in the right spot, then alcohol to deaden them. All in all it was relatively smooth, albeit a little uncomfortable. It's just generally a bit unsettling to know that you're getting needles stuck in your back in order to inject alcohol into a cluster of nerves.

I've been having some side effects and some pain from the procedure, but the good news is that the pain I was having before is no longer there. One odd thing is that my sense of smell seems to have been affected. Some odors and tastes seem overly strong or grossly exaggerated. I am also having some abdominal discomfort (different than the pain I was having before), but the doctor indicated that it was to be expected to experience some.

I feel like I've been sequestered from the world these past two months. After coming back from Chicago I had the follow-up endoscopy, and was totally caught off guard by the news of having the tumor pushing on the duodenum, which has resulted in me having to restrict my diet to liquid/near-liquid. I totally miss salads, peeling and eating a whole orange, biting into a crisp Fuji, taking a big bite out of a perfectly grilled ribeye, not to mention savoring the deep dish pizza I planned on ordering after returning from Chicago. Other medical staff I've been talking with have indicated that I need to change my eating amounts as well - meaning smaller more frequent meals. On top of the diet changes I then started experiencing the pain, which still isn't clear in origin. All of this happened so close together that it's been stunning. I'm just now starting to feel more (airquotes) normal, which primarily means that the pain I was having before the block is no longer present. It's odd feeling like I've lost two months coming out of the fugue I was in. Spring is almost here. I plan to parallel the natural cycle of regrowth.

I'm pretty sure the side effects from the block should subside within several days. After all, it's only been a few days since I had the procedure. I also get a break from chemo this week, so I'm focusing my energy on rebuilding my wonderful blood. I've got the CT scan to look forward to in April, and am eager (and honestly a bit anxious) to have that done, so I can hear that I can have the Whipple, and get this damn tumor out of me. It's really the only curative path. I don't want to hang all my hopes on a single hook, but the doctor's words from NorthShore Evanston Hospital are still resonate very clearly with me: there's no reason for me to not go to surgery.

I want to thank all my family and friends for helping out while I've been completely laid out. I appreciate and value your time and efforts so much, as they've made a difficult time easier to bear both for myself and my wife and sons.

Ring a ding

I'm still dealing with the pain. It's been bad, however, for some reason when I got up this morning and already felt the stabbing and aching coming back, I thought to myself: fuck you pain. I will outlast you. It felt nice to say that. I'm definitely going to be cashing in on using some anger to get me through some tough spots, despite the negative connotations with the Dark Side of the Force. I'll be yin-yanging it for certain.

These days certainly manifest the steepest battles throughout my campaign of cancer. I never thought it would be this hard, and would never wish this on my worst enemy. Right now, this pain is straight-up debilitating, and I apologize to all my family and friends for all the events I've missed or had to decline. I am taking steps to remedy the situation.

I'm seeing about getting a celiac plexus block, which is supposed to deaden a cluster of nerves that are a ring-a-ding-dinging every day. In fact, the mental image I have of the entire neural transaction is that of an Old West cookie, replete with a busted, coffee-stained, toothy grill, picking up an iron triangle and jabbing it repeatedly as soon as waking hours are upon me. Regardless, the block is conducted by a pain management doctor, and I'm hoping to see about getting it this week. It's supposed to be similar to epidurals doctors provide pregnant women to alleviate the pain of childbirth.

Alright. The pain's worse now. I'll see if I can punch it out. I'll let you know how it goes.

Since January

I haven't updated much since coming back from Chicago. The main reason is: I've been in a fair amount of pain.

When we got back from Chicago I went to Stanford for another upper endoscopy to see how the ulcer looked after having its blood supply embolized. Fortunately the duodenal ulcer looked like it was healing, however, the tumor is also significantly pushing on the duodenum so much that there are significant restrictions in the space available for my body to move food along the GI tract.

Simply put, there's a small passage open in the duodenum, and I have to remain on a liquid diet for the foreseeable future. So no deep dish pizza even if I wanted some, unless it's liquified in a blender. Ew.

Additionally, I'm now having to take regular amounts of pain medication because of a) the ulcer and/or b) the tumor pushing on the duodenum. The doctors don't seem to know what's causing the pain. On bad days it's absolutely debilitating. On not so bad days it's really uncomfortable. On good days it's not really noticeable. Lately, most of the days have been bad. For posterity's sake I'll describe the pain as mid-abdomen, with sharp stabbing waves that almost make me lose my breath at its worst and a dull ache when it's playing nice. I'm seeing a pain management doctor tomorrow, so hopefully I'll be able to explore some other options.

I have another scan scheduled at Stanford in April in order to determine if this will be operable. I have the Chicago surgeon's words echoing in mind: there's no reason for me not to go to surgery. Whether the Stanford surgeon agrees or not is a conversation I'll have later, and I'm thankful for something that's hopeful and shines with a curing light at the end of this long tunnel.

I'm not able to be as active as I was before the ulcer, but I'm doing my best to stay healthy and positive. This is a tough place to be. This is probably the toughest it's been. Thank you to all my family and friends, especially my amazing wife, who have been so supportive and helpful during these recent weeks. I love you guys.

Exodus

Leaving hospital in Chicago!! Will be Cali bound tomorrow.

Pain still there, but being managed. Heading to Stanford later in the week for another endoscopy to follow up on the ulcer's condition, healing, and next steps. Thankfully this is my week off from chemo.

Thanks to everyone for all their texts, emails, and phone calls of support. I really appreciate it.

Snow in Chicago

Quick update:

At a different hospital in Chicago, where I'm still in ICU, and about to have another endoscopy.

The initial endoscopy I had yesterday revealed the bleeding was being caused by a duodenal ulcer that's either a product of radiation, chemo treatments, or potentially tumor abrasion from the outside. I'm still waiting on the biopsy results.

They're currently giving me blood and platelet transfusions. I've not had any more vomiting.

Doc here says that after I finish my rounds of chemo that I should be able to go to surgery to try to take out the tumor given my health and age.

More updates:

Had another endoscopy to squirt some sealant on the ulcer. Then had angiogram to embolize the duodenal artery in the area of the tumor. Biopsy results inconclusive.

Now waiting to heal up and get my counts back up. Sounds like I'll be here until Monday or Tuesday.

I'm out of ICU and in a private room, which is nice as I can get better rest and am not always having a nurse come in to take blood, vitals, etc.

Lots of snow on the ground out here. Chicago looks good.

Firsts

I had a several firsts on part of the trip to Johns Hopkins.

Prior to the flight out, the previous day, I had a platelet transfusion just after I had chemo.

The day of the flight my wife and I stopped at O'Hare for a connecting flight I suddenly experienced a wave of nausea. I hot-footed it to the bathroom and promptly vomited up what looked to be a pound of Red Vines and accompanying juice and realized that I had just vomited some blood. I've never done this before. It was rather disconcerting.

My wife and I then hightailed it to the gate to talk to the agents about getting to the hospital and reclaiming our luggage when I had another wave of nausea. This time it wasn't as much and it was darker in color. Needless to say, I wasn't happy.

The agents at the gate changed the departing gate for the flight as the paramedics needed to use the gate to bring me out to the ambulance. They rocketed us to the hospital with lights and sirens going (when needed). If I didn't feel so shitty I probably would've been more excited to be riding in the ambulance.

Once we got to the hospital and into emergency, I got to experience something horrible. An NG tube. God I hate you NG tube. They had to put it in to suck out the contents of my stomach to see how much blood was in there. It involved shoving a plastic tube in my nose, down my throat, and into my stomach, while I'm awake. I cursed the first time they tried and finally got it in the second time. There was not much blood present, so I was able to have the tube removed. Vomiting blood was more preferable than having an NG tube inserted.

I'm now in ICU and am having a red blood cell transfusion. A GI doctor is seeing me in the morning and will likely do an upper endoscopy to see if they can determine the cause of the bleeding. We're still trying to make the appointment at Johns Hopkins on Friday. It's a whirlwind.

To recap the firsts:

1. Platelet transfusion
2. Ambulance ride to the hospital
3. NG tube (I hate you)
4. Red blood cell transfusion
5. Vomiting blood

The worst thing is that I'm in Chicago and I can't eat anything. All I'm craving is some genuine deep dish pizza, and I can't have any.

Oh well. Soon. Let's get this bleeding thing figured out, catch the flight to Baltimore, get home, and then maybe celebrate with my West Coast Chicago-style deep dish: Zachary's. Spinach and mushroom.