Spot, Gone!

This is a quick post, following outpatient surgery this morning using local anesthesia to remove the pesky spot referred to in several earlier posts. It's gone, off to the pathology lab for close examination.

Patty and I made a slow, very slow, long drive up to Beth Israel Deaconnes Hospital in Boston, for the procedure. The weather folks had predicted a messy commute, and they were right, with rain followed by heavy wet snow, and everyone seeming to have left early to beat the traffic! Still, we made it.

The procedure was simple, but totally weird. I could see the smoke rising off the cauterizing utensil they were using as they removed the spot . . . a smoking abdomen! Bizarre. Dr. M said that the "spot" was about 1 cm, and round like a marble. When he examined it before the surgery, he recognized that it felt different than it had in October when I went to see him about it. After removing it, he labeled it "suspicious," but we'll have to wait to see what pathology has to say about it. In any event, I'm glad it's out!

Since my last postings mentioning the spot, and Julie's "Out, out damn spot!" comment, we've all been quoting Lady Macbeth frequently. And now it's out, and I feel immensely relieved. Thank you to all of you who wrote here or by email, or expressed concern in person about my little procedure to remove that pesky spot. I very much appreciate all of the loving concern flowing to me and my family. And now I can focus on baking my Christmas cookies (an annual tradition for me) after teaching my last classes of the semester this week.

This Pesky Little Spot

Finally, I have news. After the news of my doctor visit last Wednesday, I didn't post over Thanksgiving weekend because I've been anxious to talk to the surgeon about removing the spot in my abdomen along my scar. I finally talked with Dr. M today, and he's going to do day surgery with local anesthesia next Monday, December 4.

The oncologist doesn't seem worried about this spot, the radiologist didn't even comment on it in his report, and I'm not sure that Dr. M is worried about it, either. But he gets that I'm worried, and he's going to remove it. On the CT scans from mid-November, there's a side view where the spot is really clear, and it's connected to two "bright lines" that make me wonder if they are blood vessels feeding the spot. I could be completely wrong, and I hope I am, but I am very clear that I want it out. I guess I've mentioned that!

In the last week, I've discovered a new blog, the "Assertive (Cancer) Patient." The author, Jeanne, has a wonderful way of encouraging cancer patients to be involved and assertive in their treatment. I've certainly discovered the importance of speaking up for myself, making sure I know what's going on, and also trusting my instincts. Jeanne's main page begins by noting that reasons to be assertive are:
* You will get better care.
* You will probably live longer.
* You will feel better about yourself and your illness.

So, whether I'm right or wrong to be worried about this "spot," I know I'll feel better once the surgery is over. And now that I have an appointment, I can think about other things. Like surviving/thriving six months post diagnosis! Like the plans Patty and I just made to go to the Virgin Islands in March for a winter break! Like living longer than my doctors ever imagined when they diagnosed me six months ago.

Musings and Body Sensations

It's been a while since I posted on the blog, and I'm acutely aware of that. Some of it is that my real, full-time, paying job has been demanding more attention, and the full-time, non-paying job of cancer has slipped into second place. For now, at least. The other part is that I was out of town last week for a professional conference, in New Orleans, seeing colleagues I generally see only once a year and exploring the city, post-Katrina. The conference was good, New Orleans was both sad and hopeful (bittersweet, like cancer?), and seeing my long-distance friends and eating great food was wonderful.

My body has had a few sensations that have taken my attention. Last week, my abdomen was sore as it hasn't been since the summer. I puzzled and worried about it for a few days, and then remembered that I had carried a kayak for a few hundred yards at the beginning of the week. The soreness went away, and I realized that it was probably more weight than I should have carried, even 4 1/2 months post surgery.

Then there was the firm spot in my abdomen, toward the end of my surgical scar. I felt that almost two weeks ago for the very first time, and puzzled and worried about it, but knew I wouldn't do anything right away, as I was going to the conference. So I prodded and pushed and worried when I remembered it, and a week later, I described it to the nurse case manager from my HMO in a phone call. Since I'm seeing my primary care doctor this coming Monday, I told her that I would have my doctor check it out. Instead, she encouraged me to call my surgeon about it. She sounded worried for me, and I had wanted to talk to the surgeon anyway, so I called and got an appointment the next day.

The surgeon had a great explanation for it. He is 99% sure that it's a knot of thread, used to stitch up the fascia (under the skin). They started at the center point on my incision and stitched toward my side, and when they get to the end, they made a big knot. Although the thread will dissolve eventually, he said it's not unusual to feel it (or to see it during subsequent surgery) within a year of the surgery itself. And, if he's wrong and it's a little spot of cancer growing, it's in the fat tissue and they wouldn't do anything until they have a better sense about what's happening. So, he'll check out my next CT scan to see what it looks like.

We also talked about the possibility of removing my cancerous bile duct (called a Whipple procedure) if I continue to feel good and the cancer hasn't spread and I am one year or so post surgery. I almost hate to admit my hopefulness for this, because the future is as uncertain as ever, and I just keep working to take my life one day at a time. So, I go through my life as well as I can, and try not to project into the future too much. Still, when I got the clean scan in September, Patty said "Let's use this time to talk about a cure, a real cure!" I knew I wanted to talk about the possibility of surgery with the doctor who did the surgery last May.

My next CT is scheduled for Nov. 17, with the new oncologist on the job. I hate changing physicians under any circumstances, and now I have to get used to someone new!

So, that's it. Next week marks 5 months post diagnosis, and I continue to feel good. The quiet around my disease is welcome, yet strange, and feels like part of this shift from acute to chronic. I've had these little worries over the past two weeks, and I'm fine and I'm working and I'm enjoying my family and my life.

How Did I get Here?

I haven't actually met someone else who's been diagnosed with gallbladder cancer (GBC), but I have read some stories in blogs and on discussion boards about the experiences of others. My initial questions about someone else with this diagnosis focus on how and why the disease was diagnosed, and how they have been doing since the diagnosis. I mention some of the details of my experience in my first post, but want to say more.

Before surgery, I had no pain and my only symptoms were funny colored urine and itching. A week after the symptoms began, I saw my doctor, and by then some jaundice was visible. I had an abdominal ultrasound which revealed stones in my gallbladder (not a surprise as many family members have had stones and had their gallbladders removed), but no indication of why my bile duct was blocked. The doctors attempted an ERCP (Endoscopic Retrograde Cholangiopancreatography) the next day, but could not clear the blockage, and in fact were unclear about the cause of the blockage. A CT scan two days later revealed little more, a second ERCP was attempted, again unsuccessfully, and then surgery was performed, at first laparoscopically, and then with a full incision. The surgeon could tell that I had cancer in my bile duct; he performed a bypass, removed my gallbladder, and took samples of other tissue for testing. Pathology tests performed after the surgery revealed that the cancer originated in the gallbladder, and had spread to some surrounding tissue (besides the bile duct), meaning that I have State IV gallbaldder cancer. It's a grim diagnosis.

The cancer is rare, affecting 3,000 to 7,500 people in the United States with a new diagnosis during this year. (The numbers vary somewhat depending on which website you go to, but the numbers are very low given the total number of people in the U. S. right now.) Many people survive only 2-6 months following the diagnosis. Some folks seem to make it longer (and I'm determined to be one of those), but it's not clear what percentage do well over more time, and whether or not one of the new drugs being used for GBC are making a real difference over time in quantity and quality of life.

Since the surgery and the diagnosis of GBC, I have been recovering from the surgery and dealing with many responses to the diagnosis (more about that another day). In mid-July I had another CT scan and bloodwork. My cancer marker was down, and there was nothing in my (clearly rearranged by surgery) abdomen to indicate that beginning chemotherapy made sense then. I am feeling amazingly well, and waiting until I feel bad or the spread of the cancer shows up on a CT scan to begin therapy.