Zachary's Factor Realized

One small update: we had Zachary's deep dish pizza for dinner, and it was everything I knew it was going to be.

Additionally, my lovely and generous wife is making a run to the store (as I type) to pick up some Haagan-Dazs ice cream. My current favorite is their Vanilla Swiss Almond. What can I say - I'm just following orders from the folks who operated on me, and my wife is helping me to make sure I'm getting plenty of calories.

Blessings to the Universe, especially for the five ingredients in the HG Vanilla.

Post Op at Home

I haven't blogged in a little while, mainly because I've not been 100% on some days. I had my post-op appointment with the surgical team, and everything looks hunky-dory, however, I'm still experiencing some nausea, which makes it tough to eat. The plan with my oncologist is to eat up and get some weight on within the next week and a half before I start the chemotherapy infusions. Thankfully, I'm feeling better each day, with less nausea. I'm taking a targeted cancer treatment in the form of a pill, Tarceva, on a daily basis, which has the wonderful side effect of giving me a facial rash, which looks like acne. Thank you modern medicine and your amazing arsenal of side effects. I really wanted to relive junior high school zits again.

All bitching aside, I was able to check off all the items on my list. It's so nice to be home. Sleeping in my own bed was such a treat. Coconut water tastes better than I remember. I want to thank the inventor of popsicles, because I've had so many lovely flavors as of recent. The heparin shots are just a painful memory, and while I wasn't able to finish the entire bowl of phở, I was able to enjoy all the nuanced flavors that go into each amazing bowl.

The other day I had some fresh mango, and it was like eating candy. It was quite divine. Don't ever take your ability to eat mango for granted.

In all, I think the surgery was a great move, as I'm now able to eat normally, and the nausea is fading. I did learn that I need to get good sleep; I had one recent day where I hadn't, and the next day I felt like death poorly warmed up in a low wattage microwave. Needless to say, I napped like the hunted of Professor Van Helsing.

I've also been able to get out of the house and catch some flicks with some friends, who've moved their work schedules around so they could hang out with me. Thanks guys. Additionally, my Mom and I caught the new Star Trek film, which was downright awesome. My aunts and uncles have also been helping out. My pool sweep now has entirely new guts, but the same exterior. It's a sleeper sweeper - very American Graffiti. Also, they found this amazing play structure for my boys and set it up for them. Our dog likes it too. One aunt knitted me some sweet beanies, and my Nana has sent me some of her homemade soup. Thank you all!
(note to readers: if you're reading this from the daily email, and not the actual blog (jromi.blogspot.com), then you're not going to be able to see the short video below that shows the boys and dog playing on the structure)

The next food item I really want to tackle is some deep dish, and there's a Zachary's right down the street from us. I don't need to finish a whole pie (my M.O. these days with regards to food is "smaller portions more frequently") rather just a slice.

I'm not certain yet what chemo drugs I'll be doing in the infusion, and not sure how they're going to make me feel. I'm hoping there'll be only minor side effects, so if you're in the area and you want to catch a movie with me in the next week or so, then please let me know. As I said, I'm using this time to get some weight back, which I'm considering my job, while also taking the Tarceva. While I joke about the acne-like side effects I really don't care too much about it, as it's supposed to get cancer cells to properly undergo apoptosis, and stop cancer cell division (i.e. hinder growth.) Anything that hurts this tumor and any of its cells is OK with me. Hurt away Tarceva. Do your worst.

Stuff I can't wait to have when I'm out

While recovering from my hospital bed, enduring diet restrictions and following strict intake/output guidelines there are some simple things I am sooo looking forward to when I get out:

1. Being home with my family

2. Drinking some apple juice

3. Drinking some coconut water

4. Eating a Popsicle

5. Sleeping in my own bed (and not get poked and prodded every 2 hours)

6. Enjoying some sunlight on my face and head

7. Eating some of my grandmother's soup

8. Not getting Heparin shots (those suckers burn!)

9. Being free of IVs and electronic monitoring devices

10. Eating some phở (yum...fresh lime juice)

I could probably go on and on, but this is a good starting point and I don't want to get greedy.

The word thus far is that I will be able to leave (check out) this coming Mon or Tues. Now I'm not saying this needs to be set in stone. I could be made to see the logic of getting out by the end of the weekend. I'm just saying...

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.