1/1/2002 Well.... thank goodness THAT year is over with! Chemo, radiation, surgery, loss of my father, September 11 th - definitely not a good year. Here is my deepest wish that 2002 is a great year for all of us. As I said last month I will no longer keep monthly updates here. Medically everything seems to be stable and we hope it stays that way. I will update as we go through the normal medical testing us'n post-cancer people have to undergo.
1/8/2002 Made an appointment to see the surgeon, Dr. Moore, on 1/15. We already have the readings on the barium swallow and CT, so don't expect to learn anything new. Will post after seeing the doctor.
1/17/2002 As expected, there were no surprises during the visit with Dr. Moore on Tuesday. In fact, it was the shortest visit I have yet had with the good doctor; probably less than 5 minutes from the time he walked through the door until I was putting my shirt back on to leave. Everything continues to look good. Have to see him again in April with a barium swallow and chest x-ray. That will mark the one year anniversary after surgery - a BIG milestone. Candace says it is possible he may release me at that time. However, I will continue to see Dr. Yaffe for several more years on a regular basis. (I don't want to start making plans too far out in fear it may jinx things!) One thing I have been doing is some weight training. My good friend, Harry, and Candace conspired to start me working out 3 times a week with Harry. Not lifting much weight, but there has been a noticeable increase in strength in just a couple of weeks. Candace and I are heading down to Florida on Saturday to spend a few days soaking up some sun and working on the condo left us after Dad's passing. We have already had it painted and we hope to get new carpet installed while down there. After that, we will see about a bit of a kitchen re-do and some new furniture and the place will be ready to serve as a refuge from the rigors of everyday life.
1/27/2002 Had a great trip down to Florida! Candace and I drove down on Saturday, the 19 th and came back up on Thursday, the 24 th. The condo was a mess! Looked just like you would expect a place to look after the painters have been in. We spend Saturday night at the local Ramada because the place was not livable. Worked our buns off on Sunday and Monday getting the place back together along with new Closetmaid shelving in the pantry and linen closet and lots of cleaning. Repaired the toilet in the small bathroom (replaced all the innards); ordered new carpet and expect to have it installed before heading back down on February 4th. I will be driving down that Saturday before heading to the Keys for the 2002 Winter Star Party! Missed the WSP last year due to feeling REALLY bad after chemo and radiation. Not going to miss it this year and am getting very excited. The pile of camping and telescope equipment is starting to grow in the basement.
2/20/2002 What a WONDERFUL trip to the Keys! Meeting many friends whom I had not seen for more than a year was great. Spending a week immersed in my astronomy hobby was great. Getting out and not feeling like a cancer patient was REALLY great! Even though we didn't get in quite as much observing time as we would have liked - the Keys weather was not with us this year - the trip was a smashing success. Just to show off my scope, here is a picture of it. You can get a sense of the size by comparing it to the kitchen step-ladder in the background.
The telescope has a mirror 16" in diameter and while it looks pretty big in the picture, it is dwarfed by some of the other scopes at the event. The biggest scope there has a 36" mirror, weights in at over 500 pounds and requires a 12 foot ladder to reach the eyepiece! Believe me, schlepping around the 125 pounds or so of this telescope still taxes my strength.
On the medical front, I have my appointment with Dr. Yaffe (oncologist) coming up on 3/7. He will be taking another peek at the CT I had done for the meeting with Dr. Moore in January. I need to set up an appointment with Dr. Moore in April and will have to have a barium swallow (oh goody!) and a chest x-ray for that meeting. Otherwise, I am doing just fine. Still lifting weights with Harry and still eating my big bowl of mint chocolate chip ice cream at night.
3/9/2002 Met with Dr. Yaffe on Thursday and everything continues to look good. It was a pretty quick checkup with the usual pokes and prods. He looked at the CT scan and didn't have much to say. I need to see him again in June with another CT scan. Will be going in towards the end of March for a barium swallow and chest x-ray and then see Dr. Moore in April. So far, so good!
3/25/2002 Had my chest x-ray and barium swallow today. No reading on the x-ray yet, but the Doctor doing the barium said everything looked about as it did last time. Always love hearing that things are staying stable!
4/14/2002 Last week marked the one year anniversary of my surgery (4/9) and the 18 month mark (4/6) of the initial diagnosis. Believe me, I'm as surprised as anyone that I'm still here! Have a meeting with Dr. Moore on the 16 th and Candace has insisted that it is time to go back to see my internist, Dr. Clark, so we have an appointment with him on 5/1. Most of our medical concerns have been about cancer, but she wants to make sure nothing else is sneaking up in the mean time. On Wednesday we head down to Florida for a long weekend. Hope to set up an installation of new kitchen cabinets while we are down for a week in June. Otherwise, nothing much else is going on at this end.
5/10/2002 Time for an update.... I guess the biggest news is "Reflux from Hell!" Before all this started I used to suffer from reflux. Medical thinking is that the reflux may be at the root of the esophageal cancer. One of the good things about surgery is it completely cleared up the reflux. Well, it cleared it up, but only on a temporary basis. While Candace and I were down in Florida last month, I had a very bad occurrence complete with aspiration of the material down into the lungs. Since then the reflux has become a regular event. It has gotten so bad that I now have chemical bronchitis caused by the damage to my air passages from the bile and stomach crud. We are fighting back with various inhalers to open up the air ways, antibiotics and by now sleeping on a wedge pillow in an attempt to keep the crud in the stomach. The wedge pillow seems to be working, but I continue to cough, gag and retch from the damage to the air passages. Things should start to slowly improve. Other than that, everything else is ok. Starting back on my rounds of medical tests with a CT scheduled for 5/27 and an endoscopy on 6/10. Will report the results of those tests when available.
5/30/2002 20 days since the last update and what a whirlwind ride we have been on! First for the good news - my CT on 5/27 came back clear with the exception of a MAJOR increase in size of the left pleural effusion. To go back, all my scans since surgery have been showing pleural effusions under both lungs (bilateral pleural effusions) which are pockets of fluid between the pleura and the lung. Has not been a problem, but Dr. Moore always comments that he might drain them one of these days. The last couple of weeks have been very bad in regards to coughing, retching, gagging and vomiting and we were looking for an answer. The CT showed the left effusion had grown to fill 50% of the left chest cavity! Not a problem - we get in touch with a pulmonologist with Kaiser and he was going to drain the chest on Tuesday, 5/28. Went in for the procedure and it was noticed my pulse was racing at about 180. After almost 2 quarts of gunk was pulled out of the chest, the heart had still not settled down and I was hooked up to an EKG machine. 30 minutes later an ambulance was transporting me to the Coronary Care Unit at Northside Hospital in a state of atrial fibrillation. We are not sure when the fib started, but it's not a good thing. Cardiologist said the plan was to do a TEE (trans-esophageal echocardigram) the next morning, make sure there were no clots forming in the heart and then shock me with the defibrillator paddles to try to return the heartbeat to a regular "sinus" pattern. I was put on a beta blocker called Lopress to slow down the heart and boost the blood pressure and was very fortunate that a few hours later the rhythm of the heart "converted" back to normal on its own. Was taken in for a nuclear stress test on Wednesday and failed. It looks light there might be some blockage of the coronary arteries, so... tomorrow (Friday) I am off to St. Joseph Hospital here in Atlanta for a coronary catheterization and, if necessary, balloon angioplasty. The cardiologist doesn't think there has been a heart attack nor does he believe there is any significant heart damage. If there is no blockage, I will be home tomorrow afternoon; should the angioplasty be required, will be spending tomorrow night at the hospital. Will post after this is finished to let you know how it goes. At least everything else is now easier with the 2 quarts of stuff gone from the chest! The CGV (choking, gagging and vomiting) has stopped and breathing is SO much easier.
6/1/2002 Just a quick follow-up to the week's roller-coaster ride.
To re-iterate: a month's worth of chest pain was eased considerably
The results? Excellent! No signs of coronary disease and no
need to do the
Questions that remain to be answered are:
Why was I in atrial fibrillation and will it come back?
Why the massive increase in pleural effusions?
What will be the cytological report on the chest fluid?
For the time being, I'm doing ok. Chest is sore where the
Never a dull moment in our dance with the dragon!
6/10/2002 Good news today from the endoscopy! Everything is looking clear down there with the exception of a bit of redness around the surgical line that the GI doc attributes to reflux irritation. So, clear on both the CT and the endoscopy! Have a meeting with the pulmonologist on Wednesday to see how the fluid in the chest is doing. Went in Friday for a new set of chest films and there is still what appears to my untrained eye a lot of fluid around the lung. Will see what the doctor wants to do and will report it here. Thursday I have a post-hospitalization meeting with my primary care physician. Still have not received the path report on the chest gunk and hope to get that at that time. As a firm believer that bad news will actively hunt you down, I'm hoping the lack of news means nothing ugly showed up in the cytology. Still need to get together with the cardiologist, but that may have to wait until we get back from Florida. Will report any new results as they occur.
6/14/2002 Off to Florida tomorrow for a week laying in the sun and just relaxing. Will be coming home to a full schedule of medical work including having another liter of junk pulled out of my chest and getting hooked up to a Holter monitor for 24 hours. The monitor will check my heart beat for the whole time to see if anything ugly is going on in the chest. Too excited about the trip down south to spend time talking about medical stuff right now. Will cover all that when we return.
7/2/2002 Wish I could report nothing but good news, but that's not the case. First off, the trip to Florida was wonderful. Weather could have been better and we did end up in an auto accident (no one hurt, but some sheet metal damage), but other than those minor things, it was great.
Now for the not so good stuff. I am going into the hospital tomorrow for some surgical work. Was supposed to have the fluid drained out of my chest last week, but the surgeon and pulmonologist got their heads together and decided to submit me to a thoracoscopy and talc pleurodesis. While the test on the first chest fluid didn't show up any cancer cells, the surgeon wants to take a look around inside the chest cavity (thoracoscopy) and "glue" the lung to the pleural wall (talc pleurodesis) to prevent any more fluid build up. Our major concern is that the effusion turns out to be malignant. The test used on the first drainage of fluid isn't 100% certain, so the docs want to poke and prod in there to make sure nothing ugly is growing. If something nasty is found... well, we'll cross that bridge when we reach it. I think we have a pretty good chance of nothing being found and I hope to be back home in a couple days.
Getting ready to go back into surgery brought forth memories of the same routine 14 months ago when I had the esophagectomy. Not real happy recollections, but this procedure should be a breeze compared to what we went through before. That's where things stand right now. Will let everyone know how the hospital stay turns out as soon as I get home.
7/3/2002 The best laid plans.... Didn't go into the hospital today. Surgeon's office called about 8:30 this morning to say the Doctor's 7:30 operation had not started yet. They called back at 9:40 to report the same thing. Dr. Moore decided to schedule me for Friday, so it's into the hospital Friday at 7:30 AM with a surgical start time of 10 AM. At least now I can have some BBQ and watermelon with the family on the 4th!
7/8/2002 Back home from the hospital and glad that's over with. Dr. Moore commented that it didn't seem likely that such a minor couple of cuts could hurt so bad, but they sure do. Thank heaven for drugs, but we already knew that. Here's a quick run down of what happened. We went in Friday at 7:30 AM and finally got into the OR around 10:45. The usual pre-surgical flutters were calmed with a blast of Versed just before rolling down to hall and my last coherent memory was the inside of the OR. Woke up in recovery room about 2 and a half hours later to a sore chest and an obvious mass of bandages on the left side of the chest. Candace got the first report from Dr. Moore and the news was all good. No visible signs of metastatic disease inside or outside of the lungs! We should get the final pathology report this afternoon or tomorrow.
Wasn't nearly as bad this time since I awoke with only a chest tube (just one unlike the 2 after the esophagotomy), a single IV line and an oxygen feed. I did end up getting a catheter later on Friday night since nothing was coming out. Talk about mixed emotions - it felt SOOO good when the bladder was drained but not a shred of dignity remains after something like that is done to you.
Spent Saturday recouping after the surgery and was sprung out of the hospital early Sunday afternoon. Doctor has me on 2 weeks of home recovery and then wants to see me again on 7/23 to determine if I am well enough to return to work. Biggest hassle is that my left lung has not yet fully inflated, so I am on oxygen. Have one of those roll-around oxygen cylinders for when moving around outside and use an electric oxygen concentrator at home. The concentrator gives me 50 feet of range from the R2D2 looking unit - not far enough to get into any trouble. Throat is a bit sore from where all the tubes were stuck down there, but otherwise, compared to the last surgery, it ain't nuthin'! Will post the lab reports when those come in, but the visual report has us optimistic. Appointment with Dr. Yaffe was moved to later in the month and, as I said, have to see Dr. Moore on the 23rd. With any luck that should complete this latest medical adventure.
7/11/2002 Time for an update and I apologize for being a bit late with it. First the great news: the path lab report came back 100% NEGATIVE for cancer! They looked every which way they could to find something ugly in the chest, but there is nothing there. Had some swelling and redness around the surgical sites, so went back to Dr. Moore on Tuesday. He said it was contact dermatitis from the medical tape on the bandages and nothing to worry about. I run a low grade fever on and off and he says this is normal as well. He basically was saying that I should go home and stop worrying!
For those not familiar with the device, this is an inspiration spirometer. It is used to torture patients after chest surgery! The object is to raise the yellow cylinder by sucking on the end of the white mouthpiece. After surgery, just breathing in can be agony, but the respiration therapists insist you use this device until tears start to flow. It's not a pretty picture.
7/20/2002 Met with Dr. Yaffe on Thursday and all is looking good from his point of view. We spent a few minutes going over the adventures of the past couple months and then the normal, routine office visit. While he didn't come right out and say so, Candace and I both detected a certain sense of victory (?) in his voice. He was going back over past treatments and was very satisfied to see that I stopped chemo more than 17 months ago and remain cancer free. The magic number for greatly increased odds of survival - odds approaching those of people who have not had cancer - is 5 years. Make it 5 years and your chances for a normal life span approximate non-cancer people. While we are still a long way from this 5 year mark, each day we live cancer free marks a slight decrease in our chances of recurrence. We got the impression that Dr. Yaffe is seeing our odds of survival as getting pretty good! Listen, we grab those small victories wherever we find them. On the 23rd, I'll be going in to see Dr. Moore for a post surgical checkup. The chest is still sore, but he should cut me loose from disability and let me get back to work. Still have a way to go before recovering fully from all this medical stuff. Candace and I went grocery shopping today and I was pretty tired out by the time we returned home. Another month or two should see me back to where I was before the bottom fell out of our medical recovery.
8/28/2002 Good grief! - it's been more than a month since I've updated this page! The main reason is that there hasn't been any bad news and things are just progressing along. I went in to see Dr. Moore on the 23th of July and everything was looking just fine. He repeated the pathology report from the chest that everything shows clear. What wonderful news! Recovery from the surgery took longer than I expected and it was slow going until the middle of August. Then there was a sudden turn around in how I was feeling and I've been feeling better every day. It's just about time to start the next round of medical tests - I have a CT scheduled for September 12th and will be seeing Drs. Moore and Yaffe towards the beginning of October. One fun thing we have planned is a picnic for any esophageal cancer patient, survivor or caregiver (and family) at our home on October 19th. We have already heard from several people who will be coming in from out of state to attend the festivities. We are expecting anywhere from 20 to 40 people to show up, so it should be exciting!
9/17/2002 Time for an update and I have nothing but good news!
First of all, the CT report was almost glowing. After the disaster
this summer, we were concerned over what the latest scan would
show in regard to the pleural effusions. Well - as the report
says, they are completely resolved with small pockets of fluid
remaining at the base of the lungs. Best of all, no enlarged
nodes, no spots and no cancer seen anywhere. You can not imagine
how grateful we are for this report. I am NED (no evidence of
disease) as I approach the 2 year mark from that horrible day
the doctor called to tell me I had cancer. No, we are not out
of the woods yet with 3 more years before reaching the almost
magical 5 year mark, but 2 years is a good beginning and chances
for survival keep increasing the longer one survives.
10/21/2002 It's been way too long since I've updated this, so here goes. As I said earlier, the CT scan came back looking great. I had a barium swallow and upper GI on 10/1 and that, as well, came back without any problems. My next appointment is on 11/19 with Dr. Moore, but I don't expect anything unexpected will come out of that. Candace and I spent a wonderful week in Florida from 10/5 to 10/12 celebrating both her birthday (no, I am not going to tell which it was!) and my 2 YEAR ANNIVERSARY since diagnosis! It also marked the 18 month mark from surgery - I can't tell you how fortunate I feel to have made these milestones. It also marked the first anniversary of my father's death and that did cast a bit of a pall over the week - especially since we were staying in his old condo. On Saturday, 10/19, we had a picnic for esophageal cancer patients, survivors and caregivers and it was a wonderful time! If you haven't seen the pictures, you can find them at http://ngc1514.com/Dragon/picnic.html We had about 24 people over for a day of conversation, celebration and eating. The food was catered by a local long term survivor, Jerry Broder, and it was wonderful. Jerry has a catering business in Atlanta and graciously offered to feed the lot of us. Thanks Jerry! It was so good to have the opportunity to meet many of the folks with whom I've been communicating on the ACOR EC list. Thanks to all for coming to the picnic and making it a total success. It's been a full and active month and I continue to feel better each day.
11/30/2002 Nothing much new to report. Met with Dr. Moore
on 11/19 for a 3 month checkup and it was our usual brief poke
and prod session. Since the results of the barium swallow and
CT were already known, nothing new was discussed. However, he
did mention that he now considers me a "long term survivor!"
of esophageal cancer. Told him that I plan on being around a
lot longer than this. Candace and I had a wonderful weeklong
trip to New York City during the middle of November. NYC is my
home, but I hadn't returned there for 32 years. It was good to
be back. New York remains the most exciting city in the world
with some of the best food available. We are looking forward
to a return trip - soon. Next on the medical agenda, both Drs.
Yaffe and Moore want to see me in February. Dr. Moore wants the
barium swallow and chest x-ray at that appointment, so will have
to get those scheduled.