Monday, March 18, 2013
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.
Monday, March 11, 2013
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.
Monday, March 4, 2013
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.