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.

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.

Rollercoaster

It's been a crazy these past few weeks. I'm going to spare some of the details in some cases. I figure that I'm using this blog to keep a record of this whole exciting experience, I can't just focus on the respective puppy dog and fluffy kitty moments.

About two-three weeks ago my stomach started hurting. Eventually I went into the doctor and had an X-ray. She said I needed to, um, clean myself out, which I did, but the pain was consistent. I got in touch with the doctor and she said to go into the hospital, where they'd provide me some professional services in the cleaning department. After a night's stay, nothing really major happened. I then went to radiology, where they took another X-ray and determined that my guttiwuts were all clear, so I then checked out of the hospital and ran over to get chemo. My oncologist didn't want to proceed until we did a CT scan. SO, then I went over to the imaging center, and promptly went through the device. After waiting a while back over at the cancer center, the results finally came back from the CT: all clear. I started chemo, and finally got out out later in the evening.

The next day I got in touch with the SBRT (radiation) team at Stanford in order to follow up with them regarding the symptoms following the radiation treatment. I remember them mentioning that there might be some discomfort of sorts. I've yet to hear back from them with a more definitive answer. The nurse has relayed the issue to the doctor.

In other news, we got the results back from CellPath, the place that tested my blood and the cancerous cells within it against chemo drugs. The results came back that my cancer is the most sensitive to FOLFOX, which is FOLFIRINOX minus one drug, irinotecan. My wife and I are headed to Johns Hopkins Hospital next week to talk to another oncologist there, who also works with the CellPath team. The JHH folks have also reviewed all my most recent scans from Stanford, and the doctors who have been informed of my case are the same ones who are on their pancreatic tumor board. I'm hoping to hear some ideas on treatment, as well as ask some questions (i.e. why would the absence of one drug cause greater sensitivity with the remaining ones?), and hopefully get some new ideas and options.

Additionally, for some reason I have The Who's "Teenage Wasteland" playing in my head except those two lyrics have been replaced with "chemo patient". Try it. It's quite catchy. I should warn you, the video below won't work on mobiles, so check it on a desktop.

 

Posted with Blogsy

Second opinions and a dog

It's been a little tough these past days. This most recent week was my week off between chemo cycles, which is a bit of a double edged sword because I appreciate the break from the drugs, but then I also feel like I'm not doing anything to kill cancer. Even though I wasn't getting these shots of Neupogen to help boost my white blood cell counts (I thought they were making me feel like crap) while I did the last week, I didn't feel all that great at all.

Even though I have this new plan, I'm still not feeling all that great about the situation because realistically, it's not looking like surgery is an option. My low tumor markers are a wonderful sign that the cancer is stabilizing, and there are no metastases, however I'm reticent to believe that this little asshole is going to pull back from the blood vessels as a result of the chemotherapy. I know I should be more optimistic, because the situation could be much worse, but it still isn't sitting well with me. Every now and then I have these bouts of frustration because even though I'm working with all these specialists, I feel like they don't know shit about what's really happening with me. There are these indicators (tumor markers, scans, etc) that they use to help guide the decision making process, but I feel like I'm at a point where there's no clear curative path, and it's really hard to process sometimes because of who I am.

I did get my blood off to CellPath, and I also sent copies of all my Stanford CT/PET scans/studies to some of the staff I'd met with previously at UCSF to get a second opinion, as well as handing off the same materials to folks at Johns Hopkins. In fact, the team at CellPath works pretty closely with oncologists at Johns Hopkins, and suggested that I come out for a one day evaluation, which would likely consist of meeting with the medical oncologists, and possibly radiologists. Next week should consist of following up with the different folks at UCSF and Johns Hopkins, and I'm welcoming the additional perspectives.

I start the fourth of five cycles of chemo this week. After the fifth cycle I'll likely do another scan to determine the activity and size of the tumor, and I'm hoping that some of the "haziness" that was reported in the last study can be attributed to inflammation from the radiation, and will no longer be present. Instead, I'd like to see some shrinkage with the tumor pulled back from my precious vascular tissues.

Oh yeah, as if we didn't have enough going on, we adopted a dog from the Berkeley East Bay Humane Society. His name is Buster, he's 13 weeks old, and is an American Bulldog.

A New Plan

Fortunately, the radiologist at Stanford got back to me the follow day. He'd been on vacation, and returned my call and my oncologist's the day after he got back.

Essentially, the radiologist wasn't expecting to see too much dramatic shrinkage, as there's typically some swelling/inflammation still present this close to the radiation being administered. He doesn't think there's been any progression of the tumor, and both he and my oncologist believe that the disease has stabilized. My oncologist did a tumor marker test (CA-19) and it's now in the normal range. When I first did had the marker taken it was 142. Then it dropped to 97, then 67, then 69, then 40, and now 14.

What does this mean?

For starters, this all suggests that the disease is stable, and that the radiation is working to kill the tumor. There aren't any apparent metastases elsewhere. The radiologist indicated that the radiation will continue to work for a while longer to kill the tumor and its cells. I'm going to continue to do chemotherapy to try and shrink the tumor. My oncologist indicates that we're too soon in the process to immediately start changing drugs and that we should do 2 more cycles, and I believe her. We're going to try not doing these shots that are supposed to counter effect the chemo wiping out my white blood cells (WBCs), since the shots make me feel horrible. We'll do blood work to monitor counts. After these cycles are complete I'll do another PET/CT scan (most likely in February) to determine both activity and size. If there's no change in the tumor, then we'll see about introducing another drug (or drugs).

After the scan I'm hoping that we see minimal activity, no metastases, and shrinkage or melting of the tumor away from the blood vessels. I'm coming to accept that there's a very real possibility that I might not be able to make it to surgery if the tumor doesn't respond to the chemo. I'm hopeful, but I need to be realistic, and I'm not one to bury my head in the sand. I'll need to remain cognizant of the situation, so I can make pragmatic decisions.

I'm going to do the aforementioned test that involves me providing a blood sample, and them testing to see if there are certain chemotherapy agents that cause the tumor cells to have a dramatic reaction (i.e. die). The results of the this test could be instrumental in finding the right drug(s) to use. I'm on Gemzar and Abraxane right now, with Gem being the backbone of PC treatment.

I feel a bit better with this plan. Since I'm tolerating the chemo treatment pretty well, I'm even considering going back to work. I'm not quite sure on the timing, and there are a lot of "ifs" to still be worked out. I'm going to have to spend some time talking with my employers and others to see how to handle. I don't want this option to blow up in my face if I end up needing to take time off again.

Sidenote: this week has been crazy. I had an ERCP to replace the stent in my pancreatic portion of the common bile duct, then chemo, with blood work kicking the week off. I also need to do more blood work on Friday, as this chemo really wipes out my platelets. Since I'm not doing the shots for my WBCs we're also watching those numbers. I might have to go back on them if they get too low. I have the next week off, so all my counts should go back up.

Onward.

Stenty

On my way to Stanford today for a stent replacement. They knock me out, thankfully, because once I woke up while they were shoving the scope down my throat. It was a disturbing experience.

I'm a little irked by the radiation oncology group there, as they need to get in touch with my medical oncologist to discuss the recent scan, as it has implications for my chemo treatment. I kind of feel that now they have my precious data for their research they don't have a vested interest in following up. Before I did the radiation the doctor would call the house and my mobile to explain what was going on, and they chased down the insurance approval. Now I get a quick phone call from a doctor on the team who gives me a heads up that they don't think they can do surgery. I've been trying to track the main radiologist down to get him to call my oncologist, and he seemingly can't be bothered. It's disappointing.

Good news is that I have a clear plan with my chemo. There are still some options with the drugs I can take, so I feel better about that.

Ok. Almost here. Let's stent.

What's next

I'm still reeling from the fact that there was no change in the tumor's involvement with the blood vessels. I'm not quite sure how to feel about this all. I'm angry and frustrated for sure. I don't want to wait 3 months to see what, if anything, has changed. I'm going to see if there are other more aggressive chemotherapies I can try, or at least something that's going to react more significantly with the cancer than what I'm on.

There's apparently a service that screens blood from cancer patients, and uses the samples to compare the cancerous cells with chemotherapy drugs in order to determine if there are some that are more reactive, that is, cause cancer cell death than others. The nature of cancer, especially pancreatic, is that everyone's cancer is different, and some treatments might not work as well as others. This service is a bit costly and isn't covered by insurance, but if this could help determine a more effective chemotherapy treatment and cause the tumor to shrink it'll be worth it. I haven't committed to it yet. I still have to have more conversations with both my medical and radiology oncologists.

The other night my oldest said if he had a wish he'd wish for lots of money and a big house, then quickly followed it up with wishing that I would never be sick again. I was floored because of all the things a 7 year old could think of to wish for, he made an unselfish one for his old man to get better. I'm pissed that my kids have to go through this with me, but happy to have their love and wishes during these tough times.

Scan results

Short version: the results came back and they were less than favorable in the sense that I'm not going to be going to surgery anytime soon. There was little to no change in the tumor's shrinkage back from the blood vessels, and the surgeons don't want to operate. I'm trying to get some more information (read: translation) from the doctors about what the report means, as I don't have a firm grip on the takeaway because I don't have a medical degree. It does sound like there's still some significant encasement of some blood vessels by the tumor. Little bastard.

Needless to say I'm feeling a bit angry and frustrated by this news. The doctors at Stanford want to have another scan in 3 months. 3 fucking months. I'm trying to find out if there's different treatment options available during this time. I'm going crazy with this waiting.

Prelim results

Waiting at chemo for three things: blood work, the chemo itself, and preliminary results from my scan on Monday. I'm anxious to say the least. I hope it's good news. I'm not quite sure how it's going to be articulated in the results. I'm guessing if there is shrinkage of the tumor and better margins around the blood vessels, then that would be described.

Fingers crossed. Toes crossed. Don't cross the streams (for all you Ghostbusters fans).