Left behind

For the first time ever, look who got left behind.

Since the plan was to have surgery,

we knew having him on this trip wouldn't work out.

(Crappy cell phone quality picture, but still cute as can be.)

Man how we miss the little bugger!

Curve Ball

We're back at MD Anderson for the pre-op appointments in preparation for the surgery that WAS scheduled for tomorrow.

Yup. Was. As in, past tense. As in, no longer happening.

Here's what went down:

We met with Dr. M., the surgeon, for well over an hour. He was kind, and sensitive, and informative, and, well, totally contradictory.

Dr. M. had reviewed E.'s records and scans. He palpitated E.'s questionable lymph node in the neck/shoulder area. Only he couldn't feel anything at all. He indicated that because the lymph node has been "quiet" since the PET/CT scan in September of 2009 (that was NED) and because he couldn't feel any sort of enlargement, he was thinking surgery might not be the best option after all. Like any surgery, a lymph node dissection does not come without risks. Risks include 1. bleeding, 2. damage to the laryngeal nerve (which could effect E.'s voice), and 3. damage to the phrenic nerve (which has something to do with the diaphragm). It was the recommendation of the tumor board though to dissect the lymph node and send all removed lymph nodes to the pathologist. If positive for cancer, the area of the lymph node could be zapped with radiation, or there could be additional chemotherapy. If all the pathology reports came back negative, the esophagectomy could be offered then.

If E. was going to be put under general anesthesia, Dr. M. suggested that possibly he would want the entire esophagectomy done at the same time. Huh? The big surgery? The big surgery that we've wanted for a year? The big surgery that we planned on? The big surgery that was ripped out from under us? THAT big surgery?

You can imagine the looks E. and I gave each other.

Dr. M. repeatedly reiterated that right now, E. is "cancer free." It is "very unusual" for an "advanced staged cancer patient" to be cancer free a year later. The fact that E. as a Stage IV esophageal cancer patient is still N.E.D. almost a year out is amazing. Can I get a big AMEN? Or more like something I'd say, how about a big HELL YA?!?

Putting E. through such an intensive surgery as an esophagectomy is debatable. Dr. M. is hesitant to "disturb the body where things are going so well." Yet, there are enough arguments to go through with the surgery as well. There is no scientific data one way or the other with these particular sets of circumstances. Removing the area of the original tumor would obviously minimize (or eliminate) a recurrence in that area. The entire specimen, as well as any removed lymph nodes, could be biopsied. It would be hoped that there would be no cancer at all, but if there were still some microscopic viable cancer cells, more chemotherapy could be prescribed. With such a big surgery, there are also risks for complications (8-10% for major complications according to Dr. M.). In particular, there is one vessel to the stomach that can become damaged which would cause gangrene of the stomach, a complication more common among diabetics like E. Overall healing usually takes about six months, although that time can be extended depending on complications (like leakage). There can be some complications after a successful surgery as well. Dr. M. estimated that 90% of his patients tolerate the procedure very well once they've healed, but approximately 10% have on-going issues with reflux and "dumping" (light headedness, heart palpitations, dizziness, diarrhea).

What would Dr. M. do? It is a difficult situation with no easy answer. He hemmed and he hawed, and he went in a thousand circles, but eventually Dr. M. said, "I would wait." He would follow up with regular PET/CT scans and endoscopies every four to six months. If there is evidence of a recurrence, a "salvage esophagectomy" could be performed at that time. Dr. M. indicated that operating if the tumor recurs gives just as a good chance as operating now. He stated that the odds were that if there was a recurrence though, it would probably be distally rather than locally, in which case surgery wouldn't help anyways. If there is residual cancer in the body, we have the advantage of time already. The more time that goes by, the better the chances are that the cancer beast won't rear it's ugly head again.

Esophagectomies are standard treatment procedures for most Stage I, II and III EC patients. We questioned why such an intensive surgery was the standard when the "wait and see" approach might be more beneficial. Perhaps the surgery should not be performed immediately post chemotherapy and radiation, but rather only if there is a local recurrence? Dr. M. said that question is a common one and the research continues. Dr. M. said that statistically, if surgery is performed immediately after chemotherapy and radiation, the odds are 70% that there is still viable cancer. He indicated that after over a year of being N.E.D., those odds improve to 30%. How accurate that is, we don't know, but it sure sounded good.

After our lengthy discussion, Dr. M. left the ball in our court. The three options presented to us were:

1. "wait and see" - do follow up PET/CT scans and endoscopies every four to six months and watch for a recurrence

2. "lymph node dissection" - remove the questionable supraclavicular lymph node and biopsy it

3. "the whole thing" - perform the esophagectomy as well as the lymph node dissection

In the end, we picked Door #1. With bated breath, we will wait and see. And treasure every moment we do have ... something we should do all along anyways. Dr. M. reassured us and told us he thought it was a "wise decision." He tried to put our minds at ease and told us that if E. does not have the surgery and the cancer spreads, it would NOT be because he didn't have surgery. If the cancer has spread, it has probably spread already. Those microscopic cancer cells were probably hiding and lying in wait all along.

The other part of facing an esophagectomy that is not often discussed is the psychological part. Many people are convinced that having the surgery is their only chance for longevity. Without the surgery, they're continually anxious and worried. Is the cancer still there? What if it comes back? What if I didn't do everything I could when I had the chance? As Dr. M. put it, if you can't sleep at night without the surgery, then we need to seriously consider that aspect too. (On the flip side, having an esophagectomy is not without psychological effects either.) So, while the decision has been made to not have the surgery at this point, a variety of factors could change that. Dr. M. is willing to go ahead with the surgery if E. changes his mind too. Dr. M. also offered the option of a second opinion with one of the seven thoracic surgeons at MD Anderson, which we declined. We are very comfortable with Dr. M. and have great respect for his knowledge and experience.

Both Dr. M. and his physician's assistant reiterated what a difficult decision we were all faced with. They remembered us from our first meeting, when we had a three-month old Peanut with us and I broke down in tears. How far we have come since then. As E. and I discussed the most recent crazy turn of events, we reminded ourselves that there were hundreds of people right here in the hospital today that were wishing and praying they were in our position. We are so thankful to be counting our blessings, craziness and all.

S.

Surgery Off Again

Well, at least the surgery we were planning on is off again. It looks like there may be a different kind of surgery in E.'s future instead.

We just got off the phone with Dr. M, the surgeon at MD Anderson.

He staffed E.'s case with the Multi-Disciplinary Team this morning, which is essentially getting a consultation with 40 different practitioners in the cancer arena. All biopsies were "free of tumor," which is GREAT news. Rather than do the esophagectomy surgery though, the recommendation was to do a "dissection of the right supraclavicular node."

What that means is that they want to remove that once-positive lymph node in the right shoulder area and dissect it to make sure there is no more cancer. Even though that lymph node has decreased in size and was no longer "hot" on the PET/CT scan, there is still a chance that there could be microscopic cancer there.

The Team couldn't decide if surgery would be the best option in E.'s case. While they were impressed with E.'s amazing response to treatment, I'm assuming the fact remains that the scientific data is simply lacking. It was reiterated several times that right now, E. is cancer free. The question for the doctors remains, "How are we going to keep you cancer free?" The general consensus from the Team was to "WATCH" E. with regular PET/CT scans for any possible recurrence.

If that effin (yes, this lymph node is worthy of the f word with a capital F) lymph node tests negative, that would be the plan . . . regular PET/CT scans. If for some reason it tests positive, E. could receive radiation specifically targeted to that lymph node.

As it was explained to us previously, if there is a local recurrence in the future, an esophagectomy could be performed at that time. Likewise, if there is a distal recurrence, surgery would never be an option.

While a bit discouraged initially, we are shifting gears and look at these changes with a positive attitude. This surgery will be minor in compared to what we were expecting, with a much shorter stay in Texas and a MUCH SHORTER recovery. It's all good.

S.

Texas recap

If you don't want to wade through all the nitty-gritty details, I won't make you. The end results are this: There is still NO EVIDENCE OF DISEASE. So, as it stands right now, E. continues to remain cancer free. Woohoo!

But if you want a recap of our trip, here you go . . .

We arrived Sunday evening and were greeted by the typical summer heat and sweltering humidity. Summers in Houston ... I don't know how people do it. It makes me all the more thankful for air conditioning.

E. had his anesthesia assessment appointment Monday morning. They review his medical history to make sure nothing has changed, check on his medications, take his vitals, and make sure he understand his pre-op instructions. Also, since he hadn't had an EKG in a year, they threw in one of those for good measure too.

When we reviewed the printout of E.'s scheduled appointments, we noticed that there was no lab work scheduled. That struck us as odd since E. has had blood drawn on every previous trip. While E. was getting assessed for his anesthesia, I ran up to the oncologist's office to find out about the lab work. Turns out, the lab work had been requested in the computer, but nobody had ever signed off on the order, so we got that all cleared up and got E. scheduled for a blood draw. While there, I was also informed that our appointment that afternoon with the oncologist had been cancelled since there was no point in meeting with him until after the results of the tests and scans were available. Funny, that's exactly what I called about months ago. The receptionist suggested rescheduling for Thursday (as the GI Clinic only has office visits on Mondays and Thursdays), but I explained that wouldn't work for us as we were leaving on Wednesday. In the end, we just kind of left it open, which didn't feel entirely comfortable. I supposed we could do a phone consultation if something needed to be discussed. Or I suppose we could catch him on another trip.

Since E. was scheduled for an endoscopy (a scope down the throat to check out the esophagus and stomach, as well as collect a few biopsies) early Tuesday morning, we knew from experience that he would have to switch to an all liquid diet for 24 hours prior to the surgery. Most patients simply can't eat for 6 or even 12 hours before, but E.'s slow digestion has proved that is not sufficient. If any liquid remains in the stomach, it can be suctioned out, but if any solid remain in the stomach, the surgery is terminated and rescheduled. Therefore, E.'s diet on Monday consisted of a cup of sugar free jello for breakfast and a bowl of beef broth for dinner. According to the schedule, the day would follow the same timeline as his previous endoscopy ... check-in at 7:00 a.m., have the procedure at 8:00 a.m. and be in recovery at 9:00 a.m. As you might recall from his last endoscopy in March (or I may have conveniently failed to mention it), E. went ahead by himself while Peanut and I stayed in the hotel room and slept in. I figured we'd be there in plenty of time to pick him up. Turns out, he was done by 8:00 and the nurses called me MANY times (my ringer was turned off) trying to track me down. Vowing not to make that same mistakes, Peanut and I accompanied E. to his endoscopy at 7:00 a.m. Then we waited. And waited. And waited. He didn't even go back for his procedure until after 9:00! I think the joke was on me. On a good note, the preliminary report from the endoscopy looked good. There wasn't any sign of cancer. The GI did biopsy a few of the previous cancer areas, as well as some newly formed polyps in the stomach (we were told it was not uncommon for polyps to develop while on the antacid medication). Everything looked normal, but we will have to wait for the results of the biopsies for confirmation.

E. was then scheduled for his PET/CT scan on Tuesday afternoon (and according to the instructions given to us, he could eat nothing for six hours prior to the procedure, so still no food for E.). On our way to the Mays Clinic for the PET/CT scan, we stopped at a computer kiosk to confirm the 2:00 p.m. appointment time. It was there that we noticed that tomorrow's 9:30 a.m. appointment with the surgeon was rescheduled to 1:30 p.m. So while E. was waiting for his scan, I ran over to the surgeon's office. To make a long story short, the doctor's schedule had to be changed and appointments had to be rearranged. We were supposed to have been called, but weren't. Oops. The front desk gals suggested we check in at noon and so we could be one of the first patients of the day for the surgeon.

No sooner than E. was done with his PET/CT scans were we in the hospital cafeteria. For his 48 hours of (almost) fasting, E. was craving some fried chicken. Lo and behold, the cafeteria had fried chicken! And mashed potatoes, and macaroni and cheese, and cornbread . . . yum.

The entire trip culminated with the visit to the surgeon on Wednesday. That's where we would know the results of all the tests, all the labs, all the scans. Everything but the biopsies. Talk about anxiety!

There are no sweeter words to a cancer patient or their loved ones than the words we heard . . . no evidence of disease. The surgeon then reviewed E.'s case with us again. Technically, E. is not operable because of that pesky supraclavicular lymph node (in the shoulder area) that tested positive. But, E. is an "unusual patient." Right now, he is "clear as a whistle" and there is a possibility that he is cured. Unfortunately, the chance of recurrence is high ... as high as 70%. The surgeon further stated that most recurrences (80%) occur within the first two years. (Two years from diagnosis? Two years from treatment? Two years from surgery? I'm not sure.) Because not many Stage IV esophageal cancer patients undergo surgery, there is no scientific data in regards to the surgery. Theoretically, according to the surgeon, surgery provides the advantage to minimize at least a localized recurrence. That makes sense. If the body parts are eliminated, the cancer can't come back ... at least not there. As far as a distal recurrence, who knows. The surgeon indicated it was a difficult decision to make. If E. opts not to have surgery, the medical professionals would adopt a "wait and see" approach. E. would return to MD Anderson every 3 months or so for further PET/CT scans. If anything were to show up, they would address it at that time. If E. were to have a local recurrence (meaning in the area of the original cancer), a "salvage esophagectomy" could still be performed. If E. were to have a distal recurrence (in any other area besides the area of the original cancer), surgery would be completely off the table.

As scary as it is, we are moving forward towards surgery. We want to do everything we can possibly do to to beat this beast called cancer.

S.

Happy Summer

Summers are meant to be enjoyed.

That means backyard barbeques, drive-in movies,

and LOTS of time at the pool.

Radiation Complete for E1

The long awaited day finally arrived . . . E1 (Grandpa) is done with his 44 radiation treatments. According to him, the end didn't come a moment too soon. He received a certificate documenting his accomplishment and we all celebrated his graduation by going out to breakfast.

E1 (Grandpa) has a check-up scheduled in six weeks, basically just to make sure the side effects are clearing up, but then doesn't have another doctor appointment for six months. At that point, they'll do another blood test to make sure his PSA is back to normal. Seems a bit strange to me that there isn't a need for an earlier appointment or the need for an updated PET/CT scan, but I guess that's the way they do it when it comes to prostate cancer. In other Grandpa news, we've convinced him to get his cataracts taken care of, so he has a series of appointments for that starting in mid August . . . pre-op appt., followed by surgery for eye #1, then post-op appt. ... pre-op appt., followed by surgery for eye #2, then post-op appt. Let's see, what else can we do? He does still need a follow-up endoscopy. Oh, and there is still the matter of Grandpa's bum shoulder. And he could benefit from hearing aids. Before it's all said and done, we'll have him as good as new.

E. has been officially retired for 10 days now. The folks from work had a nice little farewell gathering for him, and I think he thoroughly enjoyed himself. I wish I could say that he's been kicking up his feet and relaxing ever since, but that is far from the case. Grandpa's radiation treatments took up each weekday morning and it seems as if the kids have had one thing after another. We keep waiting for things to slow down some, but for some reason, I don't think that will happen anytime soon.

On the health front, E. has been dealing with some very uncomfortable stomach issues lately. Aside from the stomach aches and pains, he's had the raunchiest smelling burps you ever did come across. Of course, any time there is a digestive issue, I immediately freak out. In googling his symptoms (What ever did we do in the days pre-Internet?), I learned a possibility could be food, particularly food high in protein, sitting excessively long in the stomach due to slow digestion (we know slow digestion has been an issue for E. post chemo and radiation). The situation could be exasperated by other factors, such as diabetes (ding-ding). Another possibility could be a stomach bacteria or parasite. And yet another possibility could be a gastric type cancer. My freak-out mode is still in full force.

We go back to Texas on July 18th . . . so close, yet so far. Ugh.

Retirement Countdown

E. has a total of 10 more work days. Yup, you read right . . . TEN. His last day of work will be June 18th and his "official" retirement date will be June 19th. 30 years (+ a few) and out baby!

Having him home for 14 months spoiled me rotten. It was an adjustment (more so for me probably than for him) when he went back to work part-time, but we managed. Then he went back to work full-time. Since then, our time together has been minimal. Waaaaaahhhh! He's out the door early in the morning and when he gets off work, I'm usually on the go, being a taxi driver to once place or another. Sometimes we hook up at a kid's baseball game, but it's not like it is quality time for him and I. I know I'm whining, but man do I miss him.

I'm not sure we'll get much uninterrupted time together post-retirement as it coincides with summer vacation, but at least we have a much better shot. Other than enjoying each other and the kids, no big plans yet. We'll head back to Texas on July 18th and go from there.

Oh, and have you heard? Once E.'s health stuff is all taken care of, he plans on embarking on a second career. He plans on putting that Master's Degree to use, getting his clinical hours in, passing his boards (I think that's what they're called) and becoming a Licensed Clinical Social Worker. Good thing I love him so. :)

S.