"September"
my journey with esophageal cancer

by: Mark Roger Nelson
June 11, 1964 - October 31, 2007

Part 1, 2005 | Part 2, 2006 | Part 3, 2007

(Added: Tuesday January 10, 2006)

(Wednesday Jan 4, 06)

Follow-up visit with my surgeon
My surgeon is a little concerned that I have not been able to control my weight loss. I told him that starting tomorrow I am beginning a new meal plan that I hope will help me gain weight. I told him that I have had very frequent abdominal cramps since my feeding tube was removed and I was put on a regular diet on December 21. He said it is to be expected and it may take up to a few months before the cramps go away. I also told him that I am having slight difficulty while swallowing foods. The food often tends to slow down before it gets into my stomach. In fact last week a piece of candy got stuck in my throat for a short while. It was an anxious moment. I was able to pass the food but it got me thinking about what would happen in the future should I choke on food. Would the Heimlich maneuver work on me since some of my parts are missing and rearranged? My surgeon said that the Heimlich maneuver can be administered to me as it would be to anybody else. He did schedule me for an E.G.D Procedure for this Friday to widen the food tube. This is a common procedure after my surgery as the internal healing continues.

I also talked to him about my idea to have more chemotherapy treatments. He said I need to start feeling better and get control of my weight loss before my body would be able to tolerate more chemo. He noticed fluid in my chest and scheduled a chest x-ray at the end of January.

(Thursday Jan 5, 06)

What I am currently doing is not working
I continue to lose weight. Last week I hit a new all-time low of 141 pounds. I knew that my current approach to eating was not working. Today I picked up my first meals from a company called Seattle Sutton's Healthy Eating. They prepare my breakfast, lunch, and dinner. On Thursday I pick up all of my meals for Thursday's dinner through Monday's lunch. Then on Monday I pickup my meals for Monday's dinner through Thursday's lunch. These meals are fresh, fully prepared and can be ordered for 1,200 or 2,000 calories-a-day diet. I am starting with the 2,000 calories, larger portioned meal plan since I am obviously trying to gain weight. I found myself getting really bored with the food I was eating. You need to understand that I do not enjoy eating or drinking at all. I have to force myself to eat. I have been asked if my taste buds have changed. They have but I think in a surprising way. Most food still tastes the same however I do not enjoy the taste like I use to. My favorite snacks and beverages are no longer appetizing to me. It is very frustrating not to enjoy the taste of food and drink. So at home I found myself opening a can of food or a frozen meal and eating only a small portion of the food before I got bored with the taste. Therefore I was not eating enough quantity of food. And it was not just the fact that I was bored with my food, as I have mentioned before, I was often eating while experiencing cramps and the food would often make me feel ill. Not a lot of incentives there to eat properly. My aunt Evelyn has had me over for lunch two times in recent days. She prepares good home-made food and often has several side dishes and salads in addition to the main course. I found that I would eat a little of all of the different foods and therefore eating more quantity of food. That is what got me thinking of eating the meals from Seattle Sutton. Lunch and dinner usually has at least one side item in addition to the main course. They do use any red meat or pork in their recipes so they use a lot of chicken and some fish and turkey. I will likely get chickened-out eating through Seattle Sutton so chances are you won't be seeing me order chicken when I dine at a restaurant.

(Friday Jan 6, 06)

Now a follow-up with my oncologist
I have not seen my oncologist since October 18. She was disappointed that the pre-surgery radiation and chemotherapy did not reduce the tumor as much as we had hoped. She was also disappointed that the cancer had impacted six lymph nodes rather than the estimated two. I told her that I would like to go through more chemotherapy to kill off any cancer that still may be within me. I am very concerned that I have not seen the last of this cancer. My oncologist agreed that it may be advantageous to have a few more rounds of chemo. She is going to research which chemo drugs would be best for me. She said chemo before AND after surgery goes beyond the normal treatment for esophageal cancer. Fortunately I did not have to plead my case so it will be covered under my insurance. She ordered another PET and CT Scan within the next two weeks that will now be used as my new baseline. They will be able to compare future scans against these new baseline scans to determine if there is a reoccurrence of cancer. I can't believe how many X-rays I have had over the past few months. As a reminder, I have had a lifetime's worth of radiation so this is no longer any option for me.

My new wheels
Somehow between doctor appointments today I found the time to buy a new vehicle. I purchased a 2006 Toyota RAV4. It is the smallest SUV that Toyota makes. I have never liked the appearance of the RAV4 in the past but Toyota completely redesigned it with the 2006 model. It's much more appealing and larger than previous years. I think it's a cute little truck. And it met all of my requirements including: all-wheel drive, power moon roof, and most importantly side curtain airbags. It should be a good, reliable vehicle for me.

Your Spelling Bee word is: esophagogastroduodenoscopy
Now you know why they call it an E.G.D. procedure. This procedure involves passing an endoscope, a long, flexible black tube with a light and video camera on one end, through the mouth to examine the esophagus. In my case they dilated the esophageal stricture (stretching an esophageal narrowing with a tube). I was sedated so I don't have any recollection of the actual procedure. Hopefully this will make swallowing easier for me. After the sedative wore off, I was greeted with intense abdominal cramps. Even more painful cramps then usual. The cramps lasted about two hours.

(Saturday Jan 7, 06)

The swallow test
I did find it easier to swallow food today.

(Sunday Jan 8, 06)

The swallow test continues
I was a little disappointed that my breakfast did not go down as easily as my food did yesterday. However it seems to still be better than before the E.G.D. procedure. But more importantly I did not wake up to the bad abdominal cramps that often lingered throughout much of the day in recent weeks. And the cramps did not follow the completion of meals either. Yippee! Those cramps were really making my days very unpleasant. And I'm up about two pounds.

(Monday Jan 9, 06)

It's officially totaled
As I expected, the insurance adjuster called me to let me know that my Ford Explorer is a total loss. And they are giving me a very fair cash value on the claim.

(Tuesday Jan 10, 06)

Finally – relief
I am now on my third day without the cramping. And I am definitely eating more foods than I have in the past. Since I am not able to eat normal portions of food, I divide my lunch and dinner in half. I will eat half of my meal then the second half about an hour or two later. And I snack in between as much as possible to get even more calories. Chocolate has been my calorie fix lately. It seems like I am always eating or preparing to eat. Perhaps "preparing" is not an accurate word since all I have to do is warm up the meal in the oven.

(Added: Monday January 23, 2006)

I'm sorry for the delay in updating my journal. I couldn't quite find the motivation until today. Much to say so here we go...

(Friday Jan 13, 06)

Another CT Scan
I woke up at 5:00 AM to begin drinking contrast in preparation of my CT scan this morning. Even though it was berry flavored, the contrast did not go down easily. One cup at 5:00, another at 6:00 and 7:00 then finished up the bottle when I arrived at Methodist Hospital. Then they injected more contrast directly into my blood system before the procedure. Otherwise the CT Scan was a breeze.

Are those new pants?
Last weekend I went out to buy a new pair of jeans. I was tired of all of my pants falling down to my ankles as I walked. I wondered if they would have my size being so skinny and having long legs. They best fit I could find was 30" waist – 34" inseam. The 30" waist is a little big for me but I couldn't find anything smaller and they carried many brands and styles of jeans. I would probably have to go into the boys department to get a smaller waist but then they wouldn't have a long enough inseam. And I don't know if my ego can handle having to shop for clothes in the boys department. A 34" inseam can be a little short on me but I have a difficult time finding a 36" inseam with a narrow waist. So my one pair of fitting jeans is getting a lot of use. And I drown in the fabric of most of my shirts and sweaters. More shopping to do. Having cancer is expensive!

Din-din
Tonight I went to a friend's house for a dinner party. The food was great! I wasn't feeling well that night, perhaps from all the contrast in my system and having radiation shot through my belly. And since the appetizers and dinner were so tasty, I definitely ate more food than I normally would. Shortly after dinner I felt very sick and had to leave immediately. I did not throw up though. I drank only half a cocktail all evening. The taste of beer and most alcohol is still not appealing to me.

(Saturday Jan 14, 06)

I did not feel well so I slept away at least 17 hours of the day. Even though I was not feeling well, I did manage to eat a descent amount of food even though I knew there would be a price to pay. I have to go through some discomfort if I'm every going to get some of my weight back on.

(Sunday Jan 15, 06)

I finally completed an entire book
To know me is to know I don't read books. My brain is not able to stay focused long enough on a newspaper article, let alone an entire book. As I read, my mind starts to drift off to other things I should or could be doing. I often have to read a paragraph more than once because I have no idea what I just read. I hate that about myself, but that's me and I don't know how to change my old ways. But I did pickup a book a few days ago and finished reading it today. The book "The Patient From Hell. How I worked with my doctors to get the best of modern medicine and how you can too" by Stephen H. Schneider. Stephen was a climate scientist specializing in global warming. He was diagnosed with a rare blood cancer. The book talks about how he had to get the best treatment possible in the flawed system under which most doctors must now practice. He did not feel that the standard treatment approach for his cancer was suitable for him. He believes that doctors usually approach disease by treating all patients the same based on current methods. He did not consider himself to be a typical patient and began doing his own research into possible treatments. With a lot of perseverance he was able to convince doctors and hospitals to purchase expensive equipment and to use costly drugs that are not typically used for his cancer. His results were more promising than patients who were treated traditionally and because of this, it sounds like his experimental treatment may be used for future patients with this cancer.

This philosophy is the approach that I will be using to battle my own cancer.

Why more chemo?
I have been asked by a few friends why I am going through more chemo. The reality of esophageal cancer is frightening. I have done a fair amount of research and have not been able to find any promising articles, clinical studies, or statistics. Not one! This is the statistic that I most often come across as I search the web: Cancer of the esophagus is relatively uncommon, but is one of the most aggressive and deadly of all cancers. According to the American Cancer Society the estimated number of cases of esophageal cancer for 2005 is 14,520 new cases with 13,570 estimated to die. Of the 24 most common cancers, only liver and pancreas cancer have worse survival rates. Even lung cancer trumps esophageal.

The more I research, the more it scares me even though I've know how grim it was from day one. I feel that I need to do whatever I can do to lessen the chance of reoccurrence. The way I look at it is if over 93% of its victims are dying from it, the current method of treatment is not acceptable. I am very young to get this cancer. Early on I considered my youth to give me that extra edge to be one of the few long-term survivors. Unfortunately lately, I have been looking at it differently. Why do I have this cancer at such a young age? Why didn't the pre-op chemo and radiation shrink the tumor as much as we had hoped? Why were more lymph nodes cancerous than we had expected? I now fear that I have an aggressive cancer and my youth may not have anything to do with increasing my chances of long-term survival. This is why I am breaking out from traditional treatments.

Adjuvant Therapy 101
Adjuvant therapies are used after primary treatments, such as surgery or radiation, to guard against cancer recurrences. Sometimes a cancer may appear to be localized — only growing in one spot — but it actually may have begun spreading. The cancer cells may have ventured out into the body, but in such small numbers that they can't yet be detected.
At first it appears to be an obvious choice to do more chemo. But the added benefit of an adjuvant therapy doesn't come without a price. The side effects can be more than minor inconveniences.
With lowered white blood cell counts during chemo I am more susceptible to getting illnesses or infections.

Long-term side effects from chemo can be permanent changes or damage to the heart, lungs, nerves, kidneys, reproductive or other organs. And certain types of chemotherapy have delayed effects, such as secondary cancer, that may show up years later.

(Monday Jan 16, 06)

Voice message for my oncologist
I left a message with my oncologist to call me when she has decided which chemo recipe she will be using on me. I want to do research on the chemo drug and ask how she came up with her choice. Reading the book "The Patient From Hell" prompted several new questions for my doctors. In my voice message I also mentioned that I am still having problems with my legs. They feel numb and sometimes feel like they are frost-bitten, most noticeably as I try to fall asleep.

My oncologist returned my message a few hours later and told me she has more research to do but thinks she will go with a combination of Cisplatin and Paclitaxel. Cisplatin is one of the chemo drugs I was given before surgery but Paclitaxel will be a new experience for me. She will be treating me more aggressively than other patients because she feels that my young age will help me tolerate a more aggressive treatment. And she said that I have a lot of life ahead to live. She thinks I will have four cycles of chemo, three weeks apart, starting Monday January 30.

The good news for now is that she didn't see any cancer from the results of last Friday's CT Scan. Obviously that is news I needed to hear but there still could be cancer cells within me that are too small to be picked up by scans. And that is the main reason I want to attack my cells with more chemo.

(Tuesday Jan 17, 06)

EGD # 2
I had another EGD procedure to increase the width of my food tube. Fortunately this time I did not get the sharp cramps afterward. Unfortunately I do not notice any improvement in swallowing in following days.

(Wednesday Jan 18, 06)

PET/CT Scan # 2
In September my first PET scan took nearly one hour within the machine. This time it took only 25 minutes because they have a new scanner. They had me put my hands over my head during the scan. It did not take long for the blood to rush out of my arms and begin "falling asleep". It became very uncomfortable and difficult to keep my hands still. I didn't want to move any parts of my body during the scan. Not knowing anything about the technology, my simple mind didn't want to "blur" the image. I'm sure it's not that sensitive but I was thinking a good scan was more important than several minutes of discomfort.

(Thursday Jan 19, 06)

So close to seeing my food for a second, unwanted time
I went out for dinner at a restaurant for a friend's 50th birthday. I had already eaten dinner late in the afternoon so I only ordered a fudge brownie with ice cream. After all I need those calories. I also had one coke with rum. Again I felt very nauseous so I immediately left and had a 45 minute drive to look forward to. I was really feeling horrible and couldn't wait to get home to lie down. I was on freeway 394, about two miles from home, when I started getting the sensation of having to throw up. And throw up now! There was not a safe place to pull over onto the shoulder. I didn't think I was going to make it home. Should I throw up on myself or on the passenger car seat? Either way, there would go my new car smell FOREVER. Surprisingly I made it home and I did not vomit when I got home. That was as close as a person could ever get from throwing up without actually doing it. I am beginning to wonder if my new plumbing system is even capable of the process.

I decided that I should not drink any alcohol for some time, even in the low quantities I was drinking. I am convinced it's the food and/or the quantity of food that is causing me grief but I'm sure the alcohol isn't helping any. And besides the kidneys will soon be working overtime again to filter and break down the chemo so it doesn't need more work to do.

(Sunday Jan 22, 06)

Skipping breakfast and lunch
This morning I picked up my nephew Logan for a Timberwolves game as my Christmas gift to him. With the way that I have been feeling lately after eating, the best chance that I had to feel well throughout the game and my time with Logan was to skip breakfast and lunch. I ran for the border (Taco Bell) after dropping him off. I expected that I would not feel well so I took a nap after chowing down most of my burrito. I was right. I needed a couple hours to feel better.

(Monday Jan 23, 06)

And now the PET Scan results
My oncologist called today with the PET scan results. She started off with saying "for the most part the results look great". I knew that wasn't the end of the sentence and I didn't like the words "for the most part". I wondered what was she was getting ready to say. There is a region where my stomach and esophagus were rejoined during surgery that needs to be watched. They call this benign post-surgical inflammation. It is not uncommon after having my surgery. However they cannot rule out that it is not malignant. I mentioned to her that I had the EGD procedure the day before my PET scan and wondered if that could have caused inflammation in that region. She said it is possible and will take then into consideration. She mentioned lymph nodes again. I will have another PET scan in a month or two. It sounds like the scan will be during my next round of chemo.

Chemo recipe
My oncologist is likely going with the Cisplatin and Paclitaxel chemo recipe. Paclitaxel was approved by the FDA in 1992, Cisplatin in 1978. I asked her how she came up with this decision. She said her and another (unknown) person believe this combination has the most promising studies. There was a study done on 34 patients that used this combination. Thirty four seems like a very low number to me. The results of the study had a three year survival rate of 60%. Still not very good statistics but she said better than other treatment studies. Sixty percent is great odds if they're your chance of winning the Powerball lottery but not when it comes down to your odds of being alive in three years. I asked her if she has seen any studies that show my youth will help my odds. Unfortunately there are so few studies and none of them seem to take age into consideration. Evidently there aren't enough people my age that get this cancer to do clinical studies. She did say that according to the studies of other cancers that youth and good health do seem to help. I'll take what I can get.

Good day
Today was a very good day for me. I did not get ill from eating and this is probably the first day since the surgery that I did not need to take a nap.

No more walking past the frozen food aisle
Today is the last day of my Seattle Sutton Healthy Eating diet. My weight continues to hover between 142 and 144 pounds. Although I found myself eating more quantity of food while on the Seattle Sutton plan, the food was too healthy for me. And I was getting mighty tired of chicken and meals without any meat. After all I am a carnivore. I don't think I was getting enough fat and calories in my diet. Therefore starting tomorrow my diet will consist of mainly frozen food meals as they are often high in fat and calories. We'll see if that helps me break the 145 pound barrier.

A typical day in the life of me
I continue to sleep a lot, at least 12 hours per day. Since my CT Scan on January 13, I often feel just plain yucky or nauseous after eating. This seems to be occurring about half the time I eat and it usually kicks in within an hour of eating. It will often go away within an hour or two. Napping seems to help settle my stomach. As frustrating as it is to feel this way after eating, it is still much better than the cramps I was experiencing a few weeks ago.

I told my employer that I have no idea when I will be returning to work. I told them that the only way I could get through a work day was to not eat. And that was not an option for me since I have a lot of weight to gain back and my surgeon wants me to get control of my weight before I start more chemo. And with round three of chemo starting one week from today, who knows how I will feel once that kicks in.

Things I really miss
I really miss doing the everyday, simple things in life. Going out for dinner without the fear of feeling nauseous, eating a full portion, enjoying a drink with friends like a grown-up, enjoying the taste of all food and drink, going downtown, sleeping on my side or stomach, feeling productive in society by actually working a day job, friends from work, feeling comfortable in my clothes, and most of all simply doing what I want, when I want.

New journal feature
I was thinking how "unfun" it has been to read my journal as of lately. It must seem as if I am at home all day in pure misery. I do get out of the house every once in a while. So I decided to add a section at the end of each journal update listing the activities that I was able to do, to some extent, since the previous update.

All of my social ventures have to be modified around my illness. Sometimes I am not able to do the things I was hoping to do if I am not feeling well at the time. For instance I wanted to go see my nephew play in his basketball tournaments a few weeks ago but did not fell well that day. I have had a few dinner parties where I had to leave immediately because I suddenly started feeling very nauseous. And I find myself not making many social plans as I would like to because I don't know how I will feel that particular day.

Social calendar since January 10
Went to the homes of two friends for dinner parties, walked around the Mall Of America with a retired friend from work, walked around the mall a few days later for Diabetes fund raising, took my nephew to a Timberwolves game (the Wolves were ahead the entire game but lost in the final second with a very lucky toss into the net from a Philadelphia Sixers player before the buzzer went off), had a friend over to watch a rental movie on two occasions, went to another friends house to watch a rental, went to a dinner/social at my aunt's church, and joined up with friends to celebrate the 50th birthday of another friend.

(Added: Wednesday February 1, 2006)

(Wednesday Jan 25, 06)

Not stomach cramps after all
I had one more consultation with my surgeon. I asked him a question I've been wondering since the surgery. Were the cramps I experienced from my stomach or abdominal? They were actually abdominal cramps. With all of the rearranging of my innards, it's what I had expected. He said that I will not need to see him again unless I feel there is a need. He welcomed me to call if I have any questions or concerns. He likes keeping in touch with people that have gone through this surgery. And I no longer have the chest fluid so that is one less medical appointment that I will need to make.

(Sunday Jan 29, 06)

A great week!
Today ends a great gastronomical week. There was only one meal this entire week where I did not feel well after eating. This is the first time in a long time without having cramps or feeling ill. It's too bad I'm going to break this streak by starting chemo again tomorrow.

(Monday Jan 30, 06)

Round three of chemo
Bloodwork was taken before the chemo administration. My white blood cell and hemoglobin counts were below average. My oncologist said it is to be expected with the treatment I had gone through. I guess I was expecting it to have bounced back to normal by now. My white blood cell count was 2,600 (average 4,300 – 10,800) and hemoglobin count was 12.2 (average 13.4 - 17.5). It sounds like my new chemo recipe is going to give me a descent chance of losing all/most of my hair. For a split second this slightly hit me emotionally as I processed the thought, even though I expected it during the first two rounds of chemo. I don't think it was as much about actually losing the hair but it being one more loss of something, one more thing out of my control. I could expect to see this occur during week three. That would put me into the week where I hope to be in New York City for my game business trade show. It should be an interesting trip if I'm feeling well enough. I'll have to tip the hotel maid well for having to vacuum up my hair from the linen and pillows.

"Bring it on"
That was my statement to my oncologist after I had finished asking my list of questions. I was moved to a very small room with only a recliner and two other chairs. They started with the administering of meds and fluids before the actual chemo. The brown leather chair was my home for the next 5-1/2 hours. They wheeled in a TV/DVD/VCR stand along with a list of about 100 movies. I decided to select an older movie that I have never seen. "Out Of Africa" (1985) with Meryl Streep and Robert Redford was my choice. The movie was OK and it did manage to kill 2-1/2 hours of my downtime. I napped off the remaining clock.

I was tired that night but otherwise fine. I was told that days 1-3 would be where I would feel the sickest and 7-10 is where I would be most exhausted.

(Tuesday Jan 31, 06)

Day 1
I awoke at 3:00 in the morning to dry heaves. The only thing coming up was air. Not a pleasant experience and one that repeated itself several more times as I tried to rest. Fortunately the dry-heaves took a break before I had to visit the clinic again, this time to get a shot of Neulasta in the abdomen. I wasn't looking forward that injection point but the nurse said that I have been through worse. It was no big deal. You may have seen television commercials recently for Neulasta. It is used to boost white blood cell counts while undergoing chemotherapy. I did not receive this pre-surgery. The common side-effect is bone pain as it creates produces white blood cells within the marrow.

More dry heaves throughout the day. I slept most of the day away.

(Wednesday Feb 1, 06)

Day 2
Pretty much a repeat of Day 1. Dry heaves and many naps. Most of the time I find myself carrying a paper grocery bag along with me as I navigate my home. Just in case. Fortunately I have not experienced the bone pain side-effect. As unpleasant as these first two days have been, I will consider myself lucky if I can get through the chemo without actually vomiting stomach contents. As to be expected, food is not going down easily. I just returned to my journal writing after a brief visit to the bathroom. I had to hover over the toilet for a few minutes. You guessed it --- dry heaves (if you don't count the saliva I spit out).

Social calendar since January 24
I enjoyed two lunches with work friends and friends/family, hosted two dinner parties, and went to see a good movie.

(Added: Friday February 10, 2006)

(Thursday Feb 2, 06)

Good Day
This is the fourth day after chemo. Actually felt pretty good today.

(Friday Feb 3, 06)

Weaning off the meds
I weighed in at my lowest of 138.5 lbs. I weaned off most of the chemo anti-nausea meds. Possibly as a result, I did not feel as well today as I did yesterday. However, I am not the type of person that pops a pill at the first sign of a sniffle. I want my stomach and digestive system to learn how to be normal without being controlled by meds. So that means putting up with more discomfort now.

(Saturday Feb 4, 06)

Side-effect kicking in
I noticed slight numbness at the end of my fingertips (a known side effect). I did not experience this during pre-surgery chemo. But then again this is a different chemo recipe for me.

(Monday Feb 6, 06)

Riches found
I decided to get rid of all the clothes that are way too big for me and probably always will be. I am confident that I will never be able to get back to my ideal weight. Hopefully I'm wrong. I have many pants and shirts that are collecting dust and would be more appropriately given to charity. I probably disposed of 90% of my clothes. I was surprised how many pants and shirts I owned. I didn't realize until now that I must have a clothes fetish. I have some shopping to do now. I was rewarded by my good deeds.... I found $7.25 while going through the pockets.

Levis.com just got my business
I prefer big-buck "designer" jeans but since they don't make them in my size, Levis will have to do. However I cannot even find Levis jeans in the size 30x36 so I had to order them online at Levis.com. And even there they only had one style in my size.

I had bad abdominal cramps this afternoon that lasted for about two hours.

(Tuesday Feb 7, 06)

And then come the toes
I felt a little nauseous today now that I'm not taking any meds. Now the ends of my toes are feeling slightly numb. Still feeling it in my fingers too.

(Friday Feb 10, 06)

Good numbers
I had very good blood cell counts today. They were a lot better than two weeks ago even before I had the chemo treatment. The shot of Neulasta to boost my white blood cells must have done the trick. My counts are now in the normal range. The technician struggled to draw blood from my portacath. She said it was clogged and had to inject it with Heparin to get the blood flowing. I still don't like my blood drawn so I had to keep my eyes shut for about five minutes longer than usual.

Dr. Buck
I met up with my general doctor, Dr. Buck, for the first time since being diagnosed. I wanted to talk to him about taking anti-depressants. As I've mentioned before, I am not happy and don't see that changing in the near future. I know that I'm not depressed but I think I need something to help me be happier. I am hoping by this summer that I will be feeling better physically and thus doing better psychologically. Of course, the stark reality of my unknown future is something that continues to devastate me and always will. But I don't want to rely on anti-depressants to get me through the rest of my days.

After speaking to my doctor, I decided not to take anti-depressants. He said it takes two months before they even take effect. And I don't think the possible side effects are worth it. Wellbutrin can cause problems with sleeping and other anti-depressants can cause stomach problems. And that's the last thing I need. My doctor said that I could consider seeing a psychologist if needed. It's odd to me that I hadn't even considered that as an option. For now, I'll try to cope without that too.

A little nervous about my next roller coaster ride
I asked my doctor what might happen the next time I eat a corn dog then ride a roller coaster or go on one of those rides that catapults you up quickly or slams you down to the ground. I prefaced this question with "I bet you've never been asked this question." I wanted to know because I no longer have the muscle part of the esophagus that helps keep the food in the stomach. He said that I might have problems with food coming up and it may gag me. He doesn't recommend that I eat too much before boarding these rides. I love riding the rides so hopefully this will not be an issue. I better bring an airsick bag just in case.

Oops – too much food
I've been feeling relatively well lately and tolerating food. Except tonight I ate 3/4 of a large frozen chicken pot pie. It was hitting the spot and going down relatively easily so I thought I would try to choke down a few extra needed calories. I paid the price. I got very sick to my stomach about 1/2 hour later which lasted for about 1-1/2 hours. I have to be careful not to eat too much at a sitting.

67 is the number
Of course the trips to medical appointments continue to increase. I'm now at 67. Try this for fun... count to 67 as quickly as possible. It's a little surprising to me how long it actually takes. Now consider each of those a trip to the clinic or hospital. And two of those lasting two days and one lasting six. That's a lot of medical time especially if you consider that (until being diagnosed) I had never missed a single full day of work due to illness in all of my 25 years of working.

My car now gets me to my appointments using autopilot.

Not running out to buy Rogaine
Still not losing my hair.

I see a lot less paint now
I finished my two day project of hanging new framed wall art. Kohl's had a buy one get one free sale. I took them up on their generous offer. I picked up over $1,000 worth a wall art and paid about $500. I went from four things on my wall to 26. My home seems cozier now.

Big Apple here I come
I'm taking a very early jet plane tomorrow morning. And it's nearing midnight as I type away. I will be attending the Toy Fair convention for my game business. New York City is expecting a blizzard on Sunday. Since my first Toy Fair in 2001, it so happens to either be a VERY cold week or has record setting blizzards. I'll be back on Thursday.

Social calendar since February 1
I went out to see three movies and had dinner with a friend, and by dinner I mean just a bowl of soup (that made me feel sick to my stomach shortly after).

(Added: Saturday February 18, 2006)

(Saturday Feb 11, 06)

Shirt shopping in Manhattan
I left early this morning for my trip to New York to attend Toy Fair with the goal of finding buyers of my games. Toy Fair is an absolutely huge convention full of every imaginable and unimaginable toy, game, doll, hobby, and plastic gadget. I realized on my flight that I forgot to pack my nice, expensive shirts that I was going to wear during the show. So after checking into my hotel located a few blocks off Time Square and then bringing supplies to the convention center, I walked the sidewalks of Manhattan in search of shirts that would actually fit me. I managed to find nice, reasonably priced shirts that were tailored for a slim fit. And to say I'm slim is an understatement.

(Sunday Feb 12, 06)

I may need Rogaine after all
My daily hair routine is to work in some gel, allow it to dry, then shape it (as much as my thick, annoying hair will allow) with a paste/synthetic wax product, then force everything in place with a coating of hair spray. Oh the price of beauty! This morning was not a typical hair preparation day. When I went to shape my hair with the paste/wax, out came a clump of hair over my forehead. I was shocked! I went and looked at my pillow and noticed a small amount of hair. I guess my hair is really succumbing to the chemo now. And of all places New York City on the first day of my show. I could easily see the missing section of hair but for now my thick hair is masking it to the general public.

Another one for the records
Of course I was there for yet another record-setting blizzard. Of course you heard about the 27" blizzard that hit the city today. It started yesterday with a mix of rain and snow. They started canceling flights at the local airports last night. Fortunately my plane arrived yesterday before noon. I took the subway from the 50th Street Station down to 34th and began walking the six or seven blocks to the convention center. I have walked this walk many times over the past few years but as I exited the subway station onto the sidewalk I was disorientated in the storm and started walking the wrong direction. After a block I realized my mistake. I asked a man on the street who appeared to be a local and he guided me in the correct direction. Actually I walked and talked with him as he was heading to the convention center too. It was a cold, snowy, and very windy journey. I carried an umbrella in one hand to break the wind and limit the snow in my face and a five foot long tube with booth supplies in the other. Most of the sidewalks were not shoveled so navigating the streets and sidewalks was a challenge. I did manage to take a little tumble on some ice but picked myself up (and the tube) dusted off the snow, and safely arrived at the convention center.

More snow but less of an impact
Today reminded me of the blizzard of 2003 that struck in the middle of Toy Fair dropping about 20" of snow. Although today's storm produced more snow it seemed to have much less of an impact on the city than the one in 2003. The one three years ago fell on a Monday and brought New York City to its knees. It was very odd and surreal back then to see such little activity in the streets and on the sidewalks of such a huge metropolis. And most businesses were closed as few people could get to their place of employment. This year it happened on a Sunday and they were able to get most things going relatively smoothly before the start of another business week in New York.

Dinner in Times Square
Tonight I went out to dinner with friends from the game biz. I was going to be very careful with what I ate on the trip as of course I did not want to get sick. I ordered a baked potato and cup of chili but only ate about 1/2 of my meal. We had a very good time and shared many laughs. And like all my nights in New York, I watched some of the Winter Olympics upon the return to my room.

(Monday Feb 13, 06)

Should I wash it?
I decided not to wash my hair this morning. I knew that I would lose a lot of hair in the process. I decided to carefully use a little gel and lock it in place with hair spray. Then off I went to day two of the show.

What to eat for dinner?
A "must eat" while in Gotham City is a slice of pepperoni pizza from Famous Original Ray's Pizza. Normally this would be a slice of heaven for me. Tonight it just didn't hit the spot. I could only eat about 1/3 of one slice. That was frustrating. I did pick up a slice of strawberry cheesecake at a grocery store deli on the way back to the hotel. That hit the spot and went down easily. It was a very large slice. I downed about 1/3 of that before going to sleep.

(Tuesday Feb 14, 06)

I'm sorry...
There was a lot of hair on my pillow this morning, including a clump or two. I left the following note on my pillow; "I'm sorry for all of the hair. I am going through chemotherapy. Thank you!" Along side the note I placed several single dollar bills. I didn't wash my hair again this morning and decided that I wouldn't for the rest of my trip. I wanted to deal with it when I got home. I also noticed that it seemed like I didn't have as much stubble on my face. I wondered if the chemo also slows down hair growth.

(Wednesday Feb 15, 06)

The last day of Toy Fair (Yippee)
The woman in the booth next to me just happened to be a radiation therapist. I asked her about the schooling required to become a radiation therapist. Early into my diagnosis I thought that I should consider getting into the medical field that doesn't involve blood and other bodily fluids. I just don't think I could ever get use to that stuff. And since I don't like my own blood drawn, I would feel sorry for my patient if I were the one with the needle poking into their skin in search of a vein. Shortly after my radiation treatments in October I thought that this is a job that I could do. I have received such great care since day one. It would be rewarding if I could be on the other side of the treatment and helping other cancer patients. I don't know if I am ready to go back to school and change careers. I will give it some serious thought though.

It was very interesting to talk this woman as her job made her very familiar with esophageal cancer. She said that she is currently treating a man about my age with esophageal. I told her about my online journal and gave her the website address. I asked her to please forward it onto him as I'm sure he is currently going through similar emotions and wonders what lies ahead for him. When I was first diagnosed I felt like I was the only one my age going through this. To this day I still have not communicated with anybody close to my age going through this. I hope the detail of my day-to-day struggles, emotions, and thoughts help this man come to terms as to what may happen to him and when. And if his thoughts and way of dealing with this is similar to mine, then I hope he realizes that it is to be expected to have more questions than answers, to be completely overwhelmed, and to be scared.

I asked her a question that I had intended to ask my doctors. I was told that further radiation is no longer an option for me as I have had a life's worth of treatment. She said that I cannot have more radiation in this region because it is so close to my spine. Too much radiation can damage the spinal cord resulting in paralysis.

Good Bye Toy Fair
Today was the last day of the show. And probably the last Toy Fair that I will be attending as I begin to wind down with the game business. Everything has changed for me and my game business is no longer important. It takes up too much of my time, money, and vacation hours at work. I want to travel as much as possible. I am thankful that I was able to get through the show feeling relatively well. The show hours are grueling and I did get mentally and slightly physically tired at times. I sat down during most of the show, within my 10'x10' booth, and enjoyed the people-watching. However it's not nearly as good people-watching as it is at the State Fair. I went into the show with the intention of finding a few more buyers that would allow me to sell as many of my games currently in inventory then perhaps liquidate the remaining games early next year. However I did make a new contact that will require me to go back into production of one of my games if I end up getting their order. I'm not sure how to approach this year. Should I go into production in anticipation of a possible large order? It costs a lot of money to produce another batch of games and I don't know if and when I will even get a large order. There is not enough time to produce and deliver a large order once I actually get the purchase order. I have not decided yet what I will do with my copyrights and trademarks.

On my own
My friends through the game business were all heading home today right after the show. I was on my own with a mission to see a Broadway show, which I have done every year while attending Toy Fair since 2001. As they say; "When in Rome..." My other booth neighbor highlighted several shows that she had heard were good or had seen and enjoyed herself. I took her list and went over to the TKTS Booth in the middle of Time Square where you can get up to half price admission for performances that evening. You never know what shows will be available when you show up. New shows that are getting good reviews are rarely available at the TKTS booth. They had many On-Broadway and Off-Broadway shows available but only a few that were on my short list of recommended. I decided to go see the On-Broadway show of "The 25th Annual Putnam County Spelling Bee". It was a very funny show of adult actors playing the roles of young teens during (of course) a spelling bee. And even though the theater looked to be sold out, I managed to get a front row seat even though I paid half price (about $48 bucks). I guess sometimes buying a single ticket at TKTS allows you to fill in the gaps and enable you to get better seats than if you were buying two or more. Fortunately, my seat was not directly in the center of the stage as one of the characters required him to speak in a very funny voice. And while doing so, I frequently saw a spray of spit come out of his mouth. And they placed the microphone to which the spelling bee contestants would speak into just a few feet from the end of the stage. I am convinced that some of the audience members took home some of his saliva as a souvenir in their hair. And the theater was just two blocks from my hotel so it was a short walk home. I'm glad that I picked a funny show to see.

That's Incredible!
By the way, my booth neighbor who recommended the Broadway shows is Rhonda Davidson, the wife of John Davidson. Yes, the John Davidson of pop-culture television hits such as That's Incredible! (early 80's), host of The New Hollywood Squares, and The $10,000 Pyramid. He also appeared in episodes of Love, American Style, Love Boat and hosted his own variety show for a few years. His passion is music and he currently sings on cruise ships while selling his three current CDs. Rhonda and John are some of the nicest people you could ever meet. They were my booth neighbors last year too.

(Thursday Feb 16, 06)

Strawberry Fields Forever
I had some time to pass before having to head off to the airport. And with temps in 50's today, I thought it would be fun to walk through Central Park. I hopped on the subway and disembarked at the 81st Street Station. Once on the street level I found myself just across from the amazing Central Park. It was a warm morning and I enjoyed walking around the snow covered paths taking in the views of the park and the city. Although very icy in some spots, I managed to navigate toward Strawberry Fields. This is a section of Central Park dedicated to the memory of John Lennon who lived just across the street in The Dakota Building. I walked the sidewalk in front of The Dakota and looked down its arched entrance. A building with very unique architecture that was easily recognizable from the footage in the early days following his murder in 1980. Unfortunately John was shot just four feet into the arched entrance and died in a hospital shortly thereafter. A security attendant watches guard as one did that fateful night. His wife Yoko Ono still lives here.

Excerpts from Central Park's official website:
Shaded by a grove of stately American elms, the black-and-white mosaic set in the pathway near its west entrance is a reproduction of a mosaic from Pompeii; it was fashioned by Italian craftsmen and was a gift from Naples, Italy. Its single word IMAGINE, the title of a popular Lennon song, is the only specific tribute to the musician within the beautifully maintained yet naturalistic, free-flowing park landscape. Take a stroll down the hill past a bronze plaque that lists the 121 countries endorsing Strawberry Fields as a Garden of Peace.

Do you Sudoku?
Many people are familiar, and addicted, to the current Sudoku craze which requires you to line up numbers so that every row, every column, and all nine 3x3 grids contain the digits 1 through 9. I was given an electronic hand-held version of this game as part of my large hospital gift basket from the fine folks at my day job. I played Sudoku for the first time on Saturday's flight. It also helped pass the time on my return flight. I find it addictive too. I played until I was able to solve a puzzle without making a single mistake. OK so I was playing the easiest level and it still took about 30 attempts before I completed an error-free game.

Now I have the look
Now I have the look of a person with cancer going through chemo. I have sunken in cheeks from the weight loss and patchy hair. I barely received a glance on the streets of New York. Everybody is in such a hurry to get from point A to point B. And with all of the interesting characters meandering through the city, I'm just another nameless face in the crowd. On the plane I had a more captive audience. I didn't give it too much thought as to whether they were looking or what they might be wondering, as it pales in comparison to what I have been through.

Who loves ya, baby?
My plane touched down late in the afternoon. I am now home once again. My hair is now easily coming out at the slightest tug. I did have a haircut appointment set for tomorrow afternoon. Of course the appointment was made when I had a head full of thick, strong hair. I tried bumping up the appointment to tonight but my stylist was not feeling well and was going home early. I thought I would have her first try buzz-cutting my hair very close to the scalp to see if that would work. Otherwise I would have her shave my head if that didn't look good or if the short hair would still fall out easily. I decided to wear a Gilligan-style cap to sleep tonight so that I would have less to clean up in the morning. I knew I would have a pillow and bed full of hair if I didn't. Later in the night I decided that I was fighting a losing battle. I came to terms that I would have to go bald. And why wait until tomorrow and have to clean up all that hair. I decided to shave it all off. I first started with my home hair-care clipper and got the hair as short as possible. Then out came the blade. Actually it took three blades and one hour to get the job done. A little blood was drawn but if I say so myself I did a very good job. As Kojak said "Who loves ya, baby?

I had a hunch that I would not be able to pull off a bald look. Some guys can while others cannot. When I finally finished shaving and cleaned myself up, I looked into the mirror and my hunch was confirmed. I was surprised how round my head was though. Some bald guys have bumpy and weird-shaped heads. Nonetheless, this is not a good look for me. It makes me look older, sicker, and less attractive. And most definitely, not cool. And now I will have to (want to) wear a cap when I go out in public to draw less attention to myself. And even around the house to keep my head warm. At least this is occurring during the winter months so it will seem more appropriate to be wearing a cap. I now wonder if I will be bald throughout my chemo treatments that end in early April.

Bye Bye Goatee
And since the goatee I have been sporting since my surgery is looking a bit patchy, that went the way of the blade too. My eyebrows hairs are falling out more easily too but there still remains a respectable brow. I really hope that I don't lose my eyebrows. The eyelashes are staying in, at least for now. So far all of my hair loss has been above the neckline even though my oncologist said it can occur everywhere. I'll have to wait and see what my next round of chemo does to my follicles.

(Friday Feb 17, 06)

I normally never wear caps
Today is my first full bald-day. I needed to venture out to buy caps. The only cap I own is one that I use for downhill skiing so I took off wearing a headband. The top of my head was exposed to the cold air. Early into my diagnosis I was given a local hair salon that sells caps and turbans and also makes wigs for men and women experiencing hair loss. I purchased three caps there, two on closeout at Marshall Fields, and ordered three on the website www.headcovers.com that specializes in products for medical hair loss. I placed one of my new caps over my head then proceeded to run the first of many errands of the day. My first visit was ARC Village, a thrift store that accepts donations with proceeds going to mentally challenged people. This is where I donated the clothing that no longer fits me. Excluding the salon, this was the first time facing the public without hair. It didn't bother me as much as I thought it might. But then again I was covered up likely everyone else on this bitterly cold day.

I should have passed on the fish
I have determined that too much grease does not bode well for my stomach. I tossed the remainder of my beer-battered fish fillets from the freezer. Too bad 'cause they were kind of tasty.

(Saturday Feb 18, 06)

Something not quite right
I woke this morning feeling a little unusual. My breathing felt very heavy in my lungs. I don't know if it had anything to do with all of the errands I was running yesterday in the extreme cold. And my heart is racing a bit fast too.

Can we get another round please?
I have another round of chemo on Monday. I'm apprehensive as to how I will feel next week since I had a bad case of the dry heaves after my chemo three weeks ago. And as I mentioned before, they said I will likely feel sicker with each treatment as the chemo accumulates in my body.

Social calendar since February 10
New York filled up my most of my calendar since my last journal update. I did go out with friends last night to two downtown bar/restaurants. I (kind of) enjoyed my hot tea. Not a bad choice considering it was ten degree below zero and that's not factoring in the wind chill. I got home at 1:30 this morning. It was fun and good to get downtown again.

(Added: Saturday February 25, 2006)

(Saturday Feb 18, 06)

Shake it up
I'm feeling a little ill again after eating foods today. I ate a little more than usual, but not a lot of food by any normal standards. I enjoyed a homemade strawberry malt tonight but it ended up giving me an abdominal cramp. Lowest weight to-date at 137.5 lbs.

(Sunday Feb 19, 06)

Up comes the cocoa
Today a first happened to me. About 1/2 hour after drinking hot cocoa I bent over to pick something up and the cocoa easily rolled out of my stomach into my mouth. That makes me very nervous about drinking fluids before jumping on a roller-coaster.

(Monday Feb 20, 06)

Chemo Day
I had very low blood pressure, but a good pulse, when I checked into the hospital this morning. My oncologist said that the increased heart rate that I have been feeling over the past few days may be as a result of this low blood pressure. She said to drink (8) 8oz glasses of water per day.

Cancer staging
I have seen blogs on esophageal cancer websites where everybody states their full cancer staging. I didn't know what mine was so I asked my oncologist. My stage is a T2N1B. T2 = The tumor has moved into the layer of muscles in the esophageal wall. N1B = 4 to 7 regional lymph nodes involved (in my case six). She also said I was a stage IIB. I am surprised that I did not question her more on what that means as I was told several times by doctors that I was a stage III. I don't know if a stage IIB is better or worse than any stage III. I will have to ask her next time I see her.

It was a long chemo day, from 10:00 am to 6:15. The nurse apologized a few times because she didn't time things better and could have gotten me out of there 2-3 hours earlier. It sounds like she could have administered two of the fluids simultaneously but didn't. Oh well. It just cost a little more of my time. I had my electronic Yahtzee and Sudoku to help pass the time. I couldn't master a perfect Sudoku game on level 2 with many attempts.

(Tuesday Feb 21, 06)

Very bad night
Last night I was waking up every 1/2 to 3/4 hours with the dry heaves which were causing minor ab cramps. I didn't get any quality sleep. I was surprised that shortly eating some oatmeal for breakfast that I experienced a dry heave. I was expecting to see my breakfast again.

Later in the day I went in for another Neulasta shot which boosts my white blood cell counts during chemo. The nurse told me that each shot costs $6,000. WOW! And I will have four at least four of these shots during my treatment. Down three more pounds since Saturday. Obviously I'm not eating much during the chemo.

(Wednesday Feb 22, 06)

Clear sailing
I think I went the entire evening last night without having dry heaves.

(Thursday Feb 23, 06)

Shocked
The scale now reads 130 lbs. I was shocked! I have lost A LOT of weight this week. And looking in the mirror at my bare upper-torso is scary!

(Friday Feb 24, 06)

A better day
Day four after chemo: feeling better today. I did have to take several naps to get through the day. I talked to my disability insurance company to see if I can extend my short-term disability claim expiration date from March 2 to April 10. That would give me one full week after my last chemo treatment which is April 3. I don't want to have to start work up again only to have to take entire weeks off during chemo treatment. There is no way I would try to work the entire week after getting juiced with chemo. Plus, as a computer repair tech, I am touching everybody else's keyboards and mice all day. Imagine all of the germs --- I take that back: don't. I don't want to be exposed to illnesses during my treatments either. The insurance company said they would contact my oncologist to try to get the extension approved.

Social calendar since February 17
Went out for lunch with friends/family and met up with friends from my day-job at a happy hour. It was good to see many people that I haven't seen for a few months.

(Added: Monday March 13, 2006)

Before I get started I need to let people know why the interval between my journal updates is so inconsistent. Some people were afraid that since it's been over two weeks since the last update that something might be wrong or I haven't been feeling well. Please let it be known that it is likely good news if my updates become less frequent from this point on. That means I have less to say which in my case means less bad things are happening. I will update my journal when I feel there is enough to news to report. Trust me, I'm ready to have very little to say. Aside from the last few days, it has been a non-eventful period over the past few weeks. Please read on...

(Sunday Feb 26, 06)

Ahh...the end of another chemo week
I went grocery shopping to buy foods that I have not tried eating since this all began to see I could tolerate them. I also began eating more quantity of food than in the past. I still don't have an appetite and the actual process of eating isn't normal or enjoyable. Quite often it feels like the food is piling up at the top of my stomach, which is only a few inches below my chin. It bothers me as it feels like I could choke myself if I eat more food, but I do. I have to if I'm every going to recover some of my weight. Lately most of the time I feel (relatively) OK even with this additional intake.

(Tuesday Feb 28, 06)

Wasteful
I started throwing away 204 cans of the liquid protein/calories that I was injecting into my feeding tube upon my return home after the surgery. Somebody (I assume at Methodist Hospital) ordered 240 cans. I used only 36 cans. At $2.37/can, I tossed $483.48 worth of medical supplies. The cans expired the first week of February so there really wasn't anything I could do with them. I also threw away $284.50 worth of plastic liquid bags that held the liquid and the pump set. They gave me a box of 30. I only needed 5. They expected I would be on the feeding tube for about 1-1/2 weeks so I don't know whey they ordered enough supplies for two months.

I went to the dentist today to get my six month checkup and cleaning. They would not do the cleaning because the process usually results in bleeding that in my case could cause infection since I may have reduced white blood cell counts. I didn't even consider that going into the dentist but it makes sense. They gave me a form that my oncologist will need to fill out stating when I would be able to have my teeth cleaned. So many things are different now.

I added this September journal to a website forum created for the survivors, caregivers, friends and family of those impacted by esophageal cancer. Users on the website often will abbreviate it with EC or refer to it as "the beast". The website address for Cathy's EC Café is: http://www.eccafe.org. There are many other stories from people afflicted with EC. However none of them go into the detail that September does, particularly the day-to-day struggles. I thought it might help others who are recently diagnosed to really get a full perspective of what I have gone through along with a timetable. I'm sure most people diagnosed with any cancer wonder and fear what lies ahead and when. I hope my journal will be helpful.

A long streak has been broken
I had a few dry heaves after eating breakfast today. I haven't experienced those since last week. This afternoon I had my first soda in about 18 years. I decided almost two decades ago that soda was adding a significant amount of money to my grocery bill and I really don't need to drink it. For me being raised on soda, it was surprisingly easy to quit. I still enjoy my Bacardi and Cokes every now and then but as far as straight soda, this was my first full can in a long time. Actually it was a small bottle of Diet Coke. I decided that I could use the calories and "why not". It didn't live up to my expectations or fond memories. A few days later I had a small bottle of Coke but it didn't settle well with me. I'm sure I'll have another soda every once in a while but likely few and far between.

(Saturday March 4, 06)

The Itchy and Scratchy Show
I started feeling a new sensation in my hands today after washing them. Out of nowhere it started feeling itchy and scratchy as if I touched attic insulation. Throughout the day, at random times, this sensation would appear. It's amazing how many side-effects there are with chemo. At least that is what I am chalking it up to. I can easily go about one week now without shaving my face. A few straggler hairs do break through the surface though. Some of the stragglers are gray, some are dark. It seems like the gray ones grow more quickly, almost overnight it seems. There is not much strength to the follicles so they pull out quite easily. The hair on my head is not growing either. A few small stubble hairs but they fall out easily too when I put ointment on my head to relieve the dry skin. It seems that I will be bald for a while after my last chemo treatment. Hopefully I have some hair by summer. I continue to wear a cap consistently because I don't like my bald appearance and it keeps my head warm.

(Sunday March 5, 06)

The weekly weigh in
133-1/2 pounds. That is a gain of one measly pound since last Sunday. Which brings me to an unpleasant subject and less-than-glamorous side-effect of having EC. It's called 'dumping' and its name is not very creative once you find out what it is, if you haven't already correctly guessed. Before this weekend I went at least one week without a bowel movement even though I was eating more food than my body was use to seeing since the surgery. Over this past weekend my digestive system made up for lost time. I probably had 15-20 bowel movements over the weekend. And this my friends is 'dumping'. It's when you have many bowel movements in a short period of time. And it's another reason why it can be so difficult to gain weight. I have read online forums where some people say it eventually goes away while others say it continues forever but less frequently than the first months after surgery. I'm hoping this too goes away by summertime.

(Wednesday March 8, 06)

Short Term Disability extended
My disability insurance company extended my leave of absence through April 30 after getting a note from my oncologist. I asked them to extend it to April 10 which is one week after my last chemo treatment. Later I regretted that I didn't ask for two weeks since the first entire week after chemo is rough and one more week would have been helpful. I assume my oncologist wrote a return date of April 30 or the insurance company has guidelines they use as to how many days should lapse after chemo treatment before returning to work. Either way, I think the extra two weeks is a good thing. If I do start feeling better and want to return before April 30, I will need my doctor to provide a note to the insurance company.

(Thursday March 9, 06)

I didn't see this one coming
Late in the afternoon a friend and I were heading to downtown Minneapolis to enjoy some buffalo wings. I was really going to push my gastronomical limits with this experiment. I was only going to eat a few of them to see if my system could handle spicy food. I was driving my car, and we were almost downtown, when I suddenly started feeling ill with sharp abdominal cramps. Early this afternoon I did go through a dumping episode which was followed by a first-time sensation. It felt like I had to urinate but I couldn't. It was an uncomfortable feeling but not quite painful. And the few dribbles that did come out appeared a little darker than usual. I wondered if it might have been a bladder infection or something along that line. I don't think I have ever experienced one so I wasn't sure what the symptoms were. So even though I was over (hopefully) with the dumping, and my bladder was still feeling odd, I was up for the challenge of eating some wings. I was looking forward to it all week.

We arrived at the restaurant and I immediately went in to the use the restroom while my friend fed the parking meter. I didn't know what my body needed or what I should do to relieve the pain. If I were at home I would lie down and the cramp would typically go away in about an hour. I am very use to these cramps but this one was different, particularly since I was having problems with my bladder. I went into the restroom several times with the joy of dry heaves. I couldn't urinate and I didn't vomit. My friend drove me home after his to-go order arrived. We had intended to eat the wings there but I told him to order the wings while I decided what I should do. I didn't know if I should go into Emergency or hope it passes like it always does. I decided to go home and try to sleep it off. Lying down was not helping. The pain was getting worse. The pain was so intense that it actually brought me down to my knees a couple times. It was by far the worse pain I have ever experienced in my life.

I called my uncle to ask me if he would pick me up to take me into Emergency. I could barely talk and breathe. I think I forgot to tell him what was wrong so he was probably very concerned with not knowing what is going on. He left his home immediately and was at my house within 20-25 minutes. While waiting for him, I contemplated even calling an ambulance just to get me to the hospital sooner. Within a few minutes my chauffer had arrived and off we went. It's about a 10-15 minute drive to the hospital. I was starting to feel better by the time we arrived. The Emergency waiting room was packed.

I checked myself into emergency by 8:00 pm. The attendant asked for my name and birth date. I remember getting a little emotional while I was trying to say my birth date. I didn't want to be there. I think it hit me again how sick and tired I am of being sick and tired. It took three hours before I was able to see a doctor. Except for a few exceptions it looked like they were accepting people on a first-come, first-served basis. I wondered if they would have gotten me in earlier if my pain was still as intense as it was at home. Their lab was down for a couple hours so they had to manually do blood work. I'm sure that is another reason why it took so long to see a doctor. It didn't upset me though. I can only imagine how hectic and unpredictable an Emergency room can be. I know everybody is doing the very best they can.

The process still took over two hours once I saw an Emergency doctor. By the time I talked to the doctor my cramp had completely passed and my bladder was almost back to normal. My vitals and blood counts were good. My urine specimen did show a bladder infection. I asked the doctor what might have caused it. He said you do have cancer and are at greater risk of getting infections. I was told early on that particularly going through chemo raises my odds of getting illnesses and infections. I wondered what kind of infections they were talking about. Now I know. So either the bladder infection triggered an intense cramp or turned one of my "normal" cramps into a doozey-of-one. I was home at 1:30 am along with three days worth of antibiotics.

(Saturday March 11, 06)

Mickey and Pluto --- here we come
A few weeks ago I reserved a surprise Disney vacation for my niece and nephew. I surprised them this afternoon by having them open up a stuffed Mickey and Pluto. I think I'm allowed to consider this an early birthday gift. Just the three of us will be going May 14-21. My nephew will then be twelve while my niece will almost be nine. They have never been to Disneyworld and I have not been there in over twenty years. I am really looking forward to taking them! It will also be a great break for me after this long period of medical problems and appointments.

(Monday March 13, 06)

Finally some good news
I met my oncologist this morning and asked her to clarify my cancer stage. If you recall she told me three weeks ago that I was stage II (T2N1B to be specific). The official staging is from the pathology report immediately following my surgery. Because this is so important I will try to explain the staging system again in more detail. Please keep in mind this is for esophageal cancer only. Other cancers have different staging systems.

Stages of the tumor:
I have stage II, T2 lesion. To use as reference:
T1: The tumor is only in lining of the esophagus
T2: The tumor has moved into the layer of muscles in the esophageal wall
T3: The tumor has advanced through the entire esophageal wall
T4: The tumor has affected nearby tissues

Stages of spread to lymphatic system:
I have N1 (6 out of 11 of my lymph nodes had cancer)
NX: Doctors cannot determine if cancer extends to nearby lymph nodes
N0: Cancer has not extended to nearby lymph nodes
N1: Cancer has extended to nearby lymph nodes

Metastasis:
My oncologist told me today that I do not have distant metastasis. I guess the B part of my staging is equivalent to M0. The lymphatic system can transport cancer cells to distant parts of the body, where they can grow into new tumors. This is the process of metastasis. Another aspect of staging classifies cancers based on the extent to which they have metastasized.
MX: Doctors cannot determine if metastasis has taken place
M0: Metastasis has not taken place
M1: Metastasis has taken place

A difference of eleven
Obviously it is great news to be told that I have stage II cancer, not III. I was told early on a few times that it appeared to be stage III. At least that is what my surgeon was guessing before surgery. I don't recall if my oncologist ever guessed it to be stage III. As I mentioned in my last update I wondered if a stage II could ever be worse than a stage III. Would it be better to have stage III with fewer lymph nodes involved than I had? My oncologist told me that stage II is always better than III. I asked her for survival rates for the different stages. She looked it up and found this...
Stage I: 60% chance of surviving five years
Stage II: 31%
Stage III: 20%
Stage IV: 4%
So now I'm (statistically) looking at a 31% chance over the 15-20% I kept reading on the internet when I thought I was stage III. Even though 31% is still very grim, I'll take the extra 11%.

The beginning of another chemo week
I had another chemo treatment today. This is the day I was dreading. For the past two weeks I would sometimes cringe when I would think to myself that two weeks from Monday I have to go through it again. Then it turned into one week from Monday then followed by this Monday. My white blood cell counts were very low today but just high enough to allow me to continue with my chemo treatment today. My oncologist was surprised how low it was when compared to four days earlier during the Emergency visit. She said the antibiotics wouldn't have caused it. Who knows? My blood pressure was also low which might be the result of not drinking enough fluids. She compared my weights and noticed that I tend to lose about five pounds after chemo treatment. That sounds about right. If that happens, that could put me under 130 pounds for the first time. Yikes!!!

One more to go
My last chemo is April 3. I now have a PET scan scheduled for April 17 to see if there is any evidence of cancer. If so, I will have to start another regimen of chemo. If not, I will likely start off by getting cancer checkups every two months followed by longer periods as time passes.

I felt a little nauseous tonight and had a few unpleasant dry heaves. Tomorrow will be worse. I will update my journal at the end of the week to let you know how it went.

My hands are still itchy every once in a while though not as frequently. The condition of my face skin is less than desirable. For the past few weeks I seem to be more prone to dry skin and zits. Maybe it's because my daily routine of shaving and using skin care gel and lotion has changed. I guess I need to take care of my skin a little bit better.

Social calendar since February 26
I won $69 from the Indians, enjoyed meals with friends and family, and "donated" about $20 to a different band of Indians.

(Added: Sunday March 19, 2006)

(Sunday Mar 19, 06)

A long week
Needless to say it's been a long week. I have had fewer dry heaves this week than my previous two chemo weeks but overall I feel cruddier. I did not feel well this weekend and slept horribly. My appetite has not returned and my weight reflects this. I just weighed in at 122.5 pounds. I'm getting tired of saying "a new all-time low". Now I'm starting to get very concerned about my weight and wondering what long-term effects on my body are taking place. I don't know what more I can do. I am hoping my appetite will start improving tomorrow. My spirits have been low lately. It's going to be tough to put myself through one more chemo treatment, only two weeks away.

Social calendar since March 13
Lunch with a friend and celebrated my nephew's 12th birthday.

(Added: Monday April 3, 2006)

(Monday Mar 20, 06)

I could use a little more culture in my life
Even though I felt less than spectacular today I needed to get out of the house. I have not been to many of the fine museums in the Twin Cities. I decided to go to the Weisman Art Museum designed by architect Frank Gehry. I arrived to the museum, parked, and then found out the museum was closed on Mondays. I decided to head over to the Bell Museum Of Natural History since that too was on the East Bank Campus of the University. Even though I have been to this museum, and its exhibits are quite dated, it was something to do. That museum is also closed on Mondays. I guess today was not the day to introduce myself to culture.

A supermarket full of unwanted food
Upon the return of the museum (attempts) I stopped at a grocery store. I was feeling a little worse than I did when I left my home. I actually sat in my car for about ten minutes before I could work up the strength to go inside. Once inside I could not find or think of any food in this gigantic supermarket that I would be able to eat. I walked out with only some drinking fluids and two grapefruit. My appetite is almost non-existent. It was a very frustrating experience.

(Tuesday Mar 21, 06)

I don't know if I can do this again
This was a really rough round of chemo. Usually I am feeling better about five or six days after treatment. This afternoon I didn't have the energy to get out of bed. I seriously considered not putting myself through another treatment. Of course I knew it would be best to get through the last treatment but to know that each round has been getting worse makes me wonder if I can physically and mentally do it. Just thinking about it makes me gag with dry heaves. I also considered contacting my oncologist this week to inform her how sick I was felt and to ask her what options I would have next time. Perhaps different anti-nausea drugs or going into the clinic to get IV fluids because I think my dehydration is contributing to my feeling of yuckiness. I gave it some more thought and decided not to contact the oncologist. I was afraid that she would delay or deny my last treatment. I wanted to be in control of that decision. It wasn't until tonight that I started feeling better.

Mmmm Good
And I was getting an appetite back but wasn't sure for what. If I recall correctly, I heard somebody mention chicken soup on television and thought that might hit the spot. I took a trip to the grocery store and added Campbell's Chicken Noodle Soup to my basket. And fortunately it did hit the spot.

(Sunday Mar 27, 06)

Hercules Hercules ---- I ain't
I decided to redo my master bedroom closet by replacing white wire racks with a closet organizer/dresser system. I found it at a local home-improvement store but was unable to lift some of the boxes into my cart. I have absolutely no strength. I had a friend help me the next day by placing the boxes in my cart, my car, and bringing them up two flights of stairs to my bedroom. I will need to begin exercising soon to regain some strength. I easily tire sometimes walking up stairs.

(Monday Mar 27, 06)

Roller Coasters in my future?
Today I was lying on my side while repainting my closet. Vomit easily rolled into my mouth. That makes me very nervous about being able to do the coasters and the rides that plunge you down from great heights or blast you up.

(Wednesday Mar 29, 06)

Another dilation
I was scheduled for my third throat dilation (EGD procedure). I was prepped by the nurses and was prepared myself. The doctor decided that the problems I was currently experiencing with swallowing and eating were not worth the risks while I was still going through chemo. He was concerned that my blood cell counts may be too low in case something goes wrong. This procedure does have its risks particularly in my case with the surgery that I had to rejoin my esophagus throat tube with my stomach. Here a high-level explanation of the procedure... a balloon is inserted in my esophagus and then inflated. Surprisingly this tissue does not immediately return to its original size. At least that's what the doctor and nurses told me. And since I have had this done two other times, this would have been a larger balloon which adds to the risk that the connection made during surgery could tear. And when that happens it requires immediate emergency surgery. He suggested I wait until a month or so after my last chemo, which is what I will do. There is still room for improvement as I often feel overstuffed and full just a few inches below my Adams Apple. It's not a pleasant experience to eat while it feels like food in my throat is piling up.

I continue to have numbness in my feet but it seems to have gone away in my fingers. I often feel light-headed when I stand up or get out of bed. Again, that might be symptoms of dehydration.

(Friday Mar 31, 06)

Maple syrup or oranges?
This morning I had a frozen waffle with maple syrup and an orange. I felt very sick and had the dry heaves shortly afterward. I have had these same two foods several times before without any problems. It's interesting how my digestive system inconsistently reacts to foods.

(Sunday Apr 2, 06)

The numbers game
I gained 2-1/2 precious pounds this week, eight pounds since March 19.

(Monday Apr 3, 06)

The last treatment (hopefully)
I was seen by a nurse practitioner today, not my oncologist. I told her that last week I noticed several skin discolorations on both sides of my pubic bone. They were light brown in color and fairly descent sized. I don't know how long they have been there but I knew they were relatively new. I wondered if it is harmless, skin cancer, or side-effects of chemo. The nurse practitioner was not concerned that it was cancer. She said it looks like a discoloration that happens with aging. I may call my dermatologist to get another opinion. I wonder if skin cancer shows up on PET Scans. I have one scheduled for April 17.

My hemoglobin (red blood cell) counts were the lowest since my treatments began. This can cause fatigue and other symptoms. I was given a shot of Aranesp to boost them up. Tomorrow I still go in for my shot of Neulasta to increase my white blood cell counts even though the numbers were very good today.

Well I was able to get myself through the forth and final post-surgery chemo treatment. But it wasn't easy. This morning I started feeling nauseous just knowing what's in store for me this week. I did get a bad case of the dry heaves during the last few minutes of the treatment. I think it was more a mental reaction than a physical reaction to the chemicals that were just pumped into my system.

It's going on 10:00 PM tonight and the effects of today's treatment are beginning to appear. I just had another dry-heaves attack. Did I tell you how much I hate the dry heaves?

Hopefully
The good news is that I am finally done with this round of chemo treatments. And if I'm really lucky I will NEVER need to go through chemo again. For if I do, that is a really bad thing! It means the beast has returned. I will remain hopeful.

Social calendar since March 19
Dinner with friends four times. Out to see a movie (actually the five Oscar-nominated live-action short films) with a friend. We really enjoyed the five films. I went to my aunt/uncle's house to celebrate family birthdays for the month of April. My uncle "Bud" who has been my primary driver for many of my clinic and hospital visits turns 75 this week. And I went to see a great concert by Michael Bublé. If you're not familiar with him, it's easiest to say he sings similarly to Frank Sinatra.

My one-man campaign
As a non-smoker I did not bring on my cancer. But smoking does increase your odds of getting esophageal cancer, and other cancers. Of course I would like to see my friends that still smoke QUIT. Honestly I don't understand why they still smoke, especially knowing what I am going through. But perhaps they fully don't realize how horrible this has been for me.

For all the smokers out there...
If you had to go through just 10% of what I have since September... you'd quit.
If you were given the life-expectancy numbers I am facing... you'd quit.
If you had any idea what this does to your mind, body, and spirit...you'd quit.

I have never had to try to quit smoking. I'm sure it's not easy but quitting has to be so much easier than going through this. Please quit !!!

(Added: Sunday May 7, 2006)

(Wednesday Apr 5, 06)

The beginning of agony
Well the first two days after my last chemo treatment went surprisingly well. I thought maybe I am going to get lucky and skate through the end of my chemo. I was VERY wrong. Today I vomited and had a bad abdominal cramp.

(Thursday Apr 6, 06)

4th Emergency hospital visit
Today is not a good day. I am throwing up to a point that I knew I would be going into Emergency again. I was admitted with an overnight stay. I did a lot of puking while I was there. I think I was vomiting bile, not food because I have not been eating since my chemo treatment. Bile is a thick digestive fluid secreted by the liver and stored in the gallbladder. It facilitates digestion by breaking down fats into fatty acids, which can be absorbed by the digestive tract. If bile is present, the vomit is extremely bitter. And believe me the vomiting I have done over the past few days was very bitter and dark green.

Fortunately I was able to convince the hospital staff that I was better off recuperating at home and was discharged the next day. I was still very ill but I knew that I would be more comfortable at home and would just have to "wait it out".

(Tuesday Apr 11, 06)

As bad as it could possibly get
I have never been so sick in my life as I have been over the past few days. Actually since being released from the hospital. It's a sick that you have never experienced before. It's a sick that I would never be able to come up with the proper words to fully describe how awful it has been. A sick that only going through chemo could create. I was in my own world for several days and didn't want anybody else to be a part of it. I did not want to see or talk to anybody. There was nothing anybody could do for me and honestly there was nothing I could even do for myself. I knew I had to wait this one out. I just didn't know how long the wait would be. I went about 10 days without really eating any food. It didn't do any good to even try. It would only make me feel awful and I would vomit it out anyway. This is the e-mail message that I sent out to my friends and family today:

Hi everybody!
I know many people are very concerned about me if they've heard how sick I did get from the chemo treatment last Monday. It has honestly been the worst week of my life. I could never imagine a sick this sick and to go on for so long. I am not able to eat any foods or flavored fluids. Water is the only thing that I do not vomit back up. As you may know I started getting sick last Wednesday and was admitted into the hospital for almost two days. I did go home but felt even worse, but I was more comfortable at home. I have thrown up at least 60 times over the past few days and with nothing in my belly it often looks like green or brown motor oil. I have carefully introduced some foods since last night but it will eventually make me sick until I need to puke it out. I decided this afternoon that for the next day or two I will not try eating foods and just drink water to keep hydrated. A survivalist on TV today said people can go about one month without food but only one week without water. I am going on week one without food. Hopefully in a day or two I will be able to begin eating small amounts. I think it is the best approach for me. I have tried everything else.

For now, I am physically and mentally very tired. Please do no reply to this e-mail, send messages, or call me for several days. I still need more time to rest and gather strength. As many of you may know I have had my cell phone off for several days.

And since this has been such a horrible experience, I prefer that I don't give it any more discussion next time we talk. Thank you.

I will let you know as I progress!
I love you very much!!!

Mark

I know many of my friends and family did not understand why I wanted to isolate myself at a time where it might seem like I needed help and support. I know some people thought I was being stubborn and needed to go back into the hospital and get I.V. for liquids and foods/nutrients. However, I have gotten to know my body very well over the past few months and in my heart knew what was best for me as I have gone through it all (but not to this degree). I look back at that week and a half and have no regrets as to how I managed it. I don't think there is any drug in the world that would make me feel better. Perhaps I am wrong but I just couldn't get myself to go back for more days at the hospital. Those hospital visits were absolutely horrible for me.

(Friday Apr 14, 06)

Finally
After nine days, I finally had my first full day without vomiting.

(Saturday Apr 15, 06)

Now I have to do something about my lack of strength
I have lost so much weight, strength, and body mass over the past week and a half. I can barely walk without tiring. Walking up the stairs of my townhome is a challenge. I need to rest about every half hour. It's amazing how weak I had gotten over such a short period of time. Now that I am not in vomit mode, I know that my next challenge is to overcome my weakness and build up strength. I started exercising on my elliptical machine. I set it for the easiest cycle and do two ten minute sessions per day. And ten minutes is very difficult for me.

(Sunday Apr 16, 06)

Unbelievable!!!
I weigh in at a shocking 114.5 pounds (on a 6'-1" frame). This is the lowest weight I reached during this adventure.

(Monday Apr 17, 06)

I'm not even close to being able to return to work
I am scheduled to return to work on May 1. I know there is no way that is going to happen. I cannot get through a day without having to nap constantly. I tire doing the simplest of tasks and walking. I requested an extension on my short-term disability through May 31 with my doctor and insurance company.

Today I had another PET scan that will determine if cancer is still present in my body. My oncologist is out of the office this week so I do not expect to get the test results until my oncologist appointment Monday April 24. This is a HUGE test for me for if they detect cancer it means going through more chemo. I cannot fathom the thought of going through more chemo. My last PET scan showed two "watch" areas where they were unable to determine if it was cancer. I decided not to worry about the results this week as it wouldn't do any good.

(Tuesday Apr 18, 06)

I don't understand
I have been eating fresh grapes quite frequently over the past week. Today I threw up all day after eating just six grapes. I will never understand why my digestive system will tolerate some foods one day and not the next.

I anxiously wait for my hair to begin growing back. There is absolutely no growth taking place anywhere on my body. I can go weeks without having to shave though.

(Thursday Apr 20, 06)

The appreciation of a good B.M.
Yes, B.M. as in bowel movement. I had my first B.M. in about three weeks if you can believe that. I guess when I'm not putting any food in, there's nothing to extract out.

I contacted my personal trainer to inform him of everything that has happened to me and to let him know how much weight and body mass I have lost. I want to see if I can get his help. He is going to start helping me in May. I want to begin exercising above and beyond the elliptical machine but I don't know what would be the best approach. I will leave that up to the expert.

(Friday Apr 21, 06)

So exactly what is a pressure burp?
Today has been a good day except for bad pressure burps tonight. I haven't even talked about another unpleasant side-effect of chemo that I have been experiencing quite frequently. I call them pressure burps. If I recall correctly, this all started after my last chemo treatment. I cannot undermine it though because it is quite annoying and can be quite painful. Approximately 1/3 of the time I get these pressure burps shortly after eating. It starts off feeling like bad heartburn but it then builds up as pressure in my chest. I get very temporary relief by slightly burping internally to relieve the pressure. But the relief may only last for a few seconds. It often takes over an hour of constant burping to relieve the pressure. And I guess it's probably well over one hundred of these burps before the pain goes away. I have to wait between burps as the pressure builds before it becomes strong enough for a burp to take place. And it can be quite painful sometimes. It makes for a very unpleasant hour or so and another reason why eating can be such a negative experience for me.

So you may be wondering what I do all day
I have actually been keeping very busy even during the recent difficult days. I am working on home projects such as painting my kitchen cabinets and furniture, organizing closets, my garage, going through bins and boxes and tossing things that I really don't need and wonder why I even held onto it in the first place. It has been helpful to keep as busy as possible so that I am not dwelling on how bad things are right now. Painting the kitchen cabinets alone took over a week and a half but that was while I was really sick and had to stop and rest quite frequently.

I am not sleeping well either. I wake up about every 1-1/2 hours. However I often use this time to work on one of my home projects that I'm working on. I will do something for about 1/2 to one hour and then crawl back into bed.

I think I have developed O.C.D.
Obsessive-Compulsive Disorder is an anxiety disorder and is characterized by recurrent, unwanted thoughts (obsessions) and/or repetitive behaviors (compulsions). With me going through extreme fatigue, I really have to organize my thoughts and actions to reduce the walking and climbing up stairs. I would put a lot of thought into what I needed to do and/or get when I go downstairs. It would be very frustrating for me to go downstairs and forget to do something or bring something back with me as it would be extremely tiring for me to have to repeat the stair climbing. I would often write down on a Post-It note the things I needed to do the next time I went upstairs or downstairs. I considered myself a very organized person before but now I feel like I have bumped it up quite a bit and have become compulsive on being very methodical.

(Sunday Apr 23, 06)

Part good day, part bad
I had a really acidy stomach this morning until 5:00 AM. I did not sleep all night. But then later in the day I felt great. I am up to 120.5 pounds, up six from last Sunday.

(Monday Apr 24, 06)

This is BIG!!! The test results.
So today is the appointment with my oncologist to get the results of last week's PET scan. I am either going to get the best or worst news of my life. The thought of this started to overwhelm me as I was getting ready to drive myself to the clinic. I successfully avoided worrying about it last week but now it has hit me. My stomach started churning as I began to stress out. I really had no premonition if the results would be good or devastating. Unfortunately the clinic was short-staffed today which resulted in it taking at least an extra hour to finally see my oncologist. This was one more hour of extreme stress and stomach churning. It's not what I needed today. I told my oncologist's nurse that I was a wreck. She took my vitals as quickly as possible so that my oncologist could give me the news as soon as possible. A knock on the door soon followed. I was about to get news that would greatly impact my life. She knew that I was a mess so she didn't waste any time.

For those friends that have not heard the news yet, I received amazing, wonderful test results! My oncologist and the technician at the company that does the PET scan do not detect any cancer. Wonderful, wonderful news!!! My oncologist said she was "pleasantly surprised" on the clean test results. In retrospect, it's kind of scary that she may have been expecting the worst.

My oncologist would like to see three clean PET scan results that are scheduled three months apart. One down, two to go. Once this happens, I will be tested less frequently.

As good as the news was I was not as jubilant as you might expect. I was so overwhelmed with emotions and fear that day that I had an unusual disposition. I really needed to get out of that clinic and absorb the news. And I was hungry with a craving for Kentucky Fried Chicken cole slaw. So I went through the drive-thru and picked up some chicken and cole slaw. It was mighty tasty stuff.

I needed a nap after eating my lunch. Later in the day I had my first really good cry in a long time. I was reacting to finally getting some good news today. There is finally hope in my world.

(Tuesday Apr 25, 06)

Maybe the cole slaw wasn't a good idea
I don't know the cause but I threw up about twelve times this morning. It was kind of frustrating to have such wonderful news the day before and to feel so sick the next day.

(Thursday Apr 27, 06)

Too much of a good thing
I met up with friends and siblings for my sister Becky's birthday dinner. The food was hitting the spot. I know I have a lot of weight to gain back so I am trying to eat as much as possible. However tonight I overdid it. I ate more than I should have and evidently more than my system could tolerate. By the time I returned home I was so sick. That night I threw up so many times. I probably didn't fall to sleep until the middle of the morning. I really need to be careful and not eat that much again in one sitting. I lost a lot of weight that night.

(Friday Apr 28, 06)

Adding insult to injury
So last night was a rough one but I felt pretty good this morning and early afternoon. But then it hit me like a ton of bricks. By mid-afternoon I started getting REALLY intense abdominal pains. It might have been the worst pains to-date. It was really intense for about an hour or so then slowly started to diminish in intensity. There was nothing I could do to alleviate the pain. By about 8:00 PM the pains were gone.

(Saturday Apr 29, 06)

A good day
After a couple of rough days, I was relieved that today was a good one. It seems like the side-effects of chemo have disappeared. I did not have any cramps or nausea. The only thing I am experiencing is a lot of tingling in my feet but that's a piece of cake for me and a common side-effect that I know will disappear eventually.

(Sunday Apr 30, 06)

Every little bit helps
I weighed in at 124, up 3.5 since last Sunday. I considered that pretty good considering how bad Thursday and Friday was for me this week.

(Wednesday May 3, 06)

Bye-bye burps
I have not experienced the pressure burps since last week. That is a very good thing. I am enjoying the act of eating again. Fortunately most foods are appealing to me. I have been able to eat almost anything I want since last Saturday. I seem to be making up for months of not being able to eat. I am eating small meal portions about every two to three hours. I will eat a breakfast when I wake up each time in the middle of the night. There have been days this week that I have had three breakfasts. It's been wonderful to eat as much as I have been eating. There was a few times this week that I did eat too much causing me not to feel well. Lying down and resting for about an hour would alleviate the discomfort. But the good news is that I did not have to vomit to feel better.

(Sunday May 7, 06)

I may have finally turned the corner
So Friday April 28 is the day I had the really bad abdominal cramps. Since then I have felt nearly perfect. It's almost as if my body decided to give me one last zinger then it was going to be nice to me. It wanted to remind me not to put it through another round of chemo. I hope I can deliver on that request. Nine days in a row of feeling pretty darn good has been such a relief for me emotionally and physically. I hope I have finally turned the corner and can begin the task of gaining weight and strength as I recover and try to regain a normal life.

I have worked up to three ten minute sessions of my elliptical machine on level 2. I also started walking outside today. I walked 1/2 hour without stopping. I was tired at the end of the walk but not exhausted. Next Sunday I leave with my niece and nephew for a week at Disneyworld. That will require a lot of walking and will really push me to my limits. I know it's not going to be easy but I hope I can get through it.

The scale reads 131.5, up 7-1/2 pounds from last Sunday. That is amazing! I don't expect most of my weeks will have that much weight gain but a few pounds each week will add up quickly. Yeah!!!

Social calendar since April 3
Since this was a rough period, my social life was pretty limited. I did manage a few dinners out with friends and family, a movie, and had a five course dinner on the Minnesota Zephyr train in Stillwater. That was a really enjoyable evening and a wonderful meal.

(Added: Sunday May 28, 2006)

(Sunday May 14, 06)

Off to the land of oranges
Today I departed to Florida for seven days and nights of Disney with my niece Bailey and nephew Logan.

(Monday May 15, 06)

Shopping humility
The swim shorts I packed and have worn for a few years were too big in the waist for my new weight. I had to purchase a boys medium in our hotel's gift shop. I was styling!

(Tuesday May 16, 06)

Fuzzy Wuzzy
I noticed soft white hairs, similar to the first hairs of an infant, all over my head and chin. Yippee! I had heard that it could take up to one year to grow hair back after chemo. I didn't want to have to wait that long as it was a bit toasty wearing tight caps on the warm days.

(Sunday May 21, 06)

Fuzzy Wuzzy (but a bit darker)
We returned from Florida. We had a wonderful trip! The weather was great except for one morning and afternoon of light rain. Logan and Bailey are great travelers and had fun. Fortunately I did very well while in Florida. I was able to handle all of the walking at the theme parks. A few days I did take a very short power nap in the afternoon after returning from a theme park and before heading out to another one to cap off the evening. I also did well with eating, particularly considering how it wasn't the healthiest diet of theme park food and hotel comfort food. I gained 2.5 pounds this week. Not bad considering all of the walking we did. My feet are still very tingly but it didn't bother me too bad while walking.

(Wednesday May 24, 06)

Out with my unattractive chest implant
Today I had my chest portacath removed that was used for blood work and administering chemo. This should be my last cancer-related medical appointment for a while except for future tests to make sure the cancer has not returned. It was a relatively uneventful and simple surgical procedure. I had the option to be anesthetized, which I opted for. I didn't need to know what was going on. Shortly after the procedure the doctor came into my room to tell me that during the procedure my blood splattered into his face. He asked me if I had hepatitis or HIV. I told him that I didn't. I thought that was the end of that but a few minutes later a nurse arrived with a hospital consent form giving the hospital permission to test my blood for hepatitis and HIV. I consented to the testing and had some blood withdrawn. I'm sure it's a bit anxious to health professionals when they are accidentally exposed to blood.

(Thursday May 25, 06)

Out in public, bald and proud
I was ready to go out in public being bald (almost bald) for the first time. I was very self-conscious about having people see my smooth head when I first became bald because I looked absolutely horrible and unhealthy with my sunken cheeks and anorexic frame. My face has filled in quite a bit in recent weeks since I have gained weight. And with a head full of short, fuzzy, slightly dark hairs, I was more comfortable going Kojak. It didn't bother me at all. In fact, I felt that I looked less like a person going through chemo being bald than wearing a cap when it's eighty degrees outside.

(Sunday May 28, 06)

So what lies in store for me in the near future?
I now weigh in at 136.5 pounds. I gained a measly half a pound this week. I'm sure that I will have many weeks where my weight gain will be minimal. But I'm happy with each and every half pound that I pack on.

I return to work June 1, full-time with no restrictions. That is exactly six months to the day being out from work. And early on I thought I would be returning in early January.

My next PET scan is July 18 to make sure the cancer has not returned. So hopefully the next few months will be uneventful. Therefore my journal updates will likely be few and far between from here on out. Have a wonderful summer and thank you for reading my journal and caring about my well-being. I am very glad to say that I am now doing wonderful !!!

(Added: Wednesday June 28, 2006)

(Thursday Jun 1, 06)

Back to the grindstone
Today was my first day back to work after being out for six months. I cannot believe it was six months. There were 3,274 e-mails waiting for me in my Inbox. Most of it was spam and obsolete e-mails. Surprisingly, it only took about 1-1/2 hours to clean up my Inbox. My co-worker friends had decorated my cubicle with a welcome back banner and a huge balloon that is still full of air nearly one month later. The balloon now resides in my living room. Oh yeah and they also gave me a pink, inflatable monkey. Along with several monkeys from the Barrel Of Monkey Game, I guess I now have a monkey-themed cubicle. I was able to get through a full day of work without any problems. I did take a short nap after some of the first few days of work but a friend reminded me that I used to do that BC (before cancer) so some things never change.

(Friday Jun 2, 06)

Tipping one (two) back
Beer finally tasted good to me today. I had, and enjoyed, two small beers after work with co-worker friends. The taste of all other foods/drinks has been pleasant for a month or two. It just took a little longer for the taste of beer to please the palate. I welcome its return with open arms!!!

(Thursday Jun 8, 06)

Not on the Jenny Craig diet
For the first time since my weight loss slide, I bounced back and broke the 140 pound barrier. I weighed in at 141 pounds. I have gained between 1/2 pound and three pounds over the past four weeks. It's very encouraging to see the weight coming back on.

(Saturday Jun 10, 06)

Shampoo, shampoo, shampoo
My hair continues to grow at a decent pace and is getting darker and darker almost every day. I used shampoo for the first time since mid-February. Oh yeah – today is my 42nd birthday.

(Sunday Jun 11, 06)

Happy birthday to me, Happy birthday to me...
Today I turned 42!!!

(Tuesday Jun 13, 06)

A lot has changed in one month
Today I was looking at pictures from my trip to Florida last month with my niece and nephew. I look so much healthier than I did four short weeks ago when my cheeks were sunken-in and I didn't have hair. Everybody who saw me throughout my struggle now notices the improvement in my appearance with the fuller cheeks. It's great to be able to go out in public and not look ill to other people.

(Saturday Jun 17, 06)

A little off the sides please
My hair is actually growing to the point where I need to clean it up. I took out my home trimmer and cleaned up the sides a little bit. I wonder how much longer it will be before I need to return to my stylist for a full haircut?

(Tuesday Jun 20, 06)

No more beer-bellies
While exercising on my elliptical machine tonight, I thought how even though I have gained 30 pounds, my abs are still amazingly flat. Then it occurred to me that my stomach really isn't down there anymore like it used to be. Now I guess I need to worry about getting a beer-chest since my stomach runs vertically. So far the weight has returned back uniformly over my entire body. My legs are looking the best, probably because I am putting in at least 1/2 hour per day walking or using the elliptical. Surprisingly my legs actually are getting muscular when only a few months earlier they were nothing but skin and bones. I am very pleased with the rate of my recovery!

(Sunday Jun 25, 06)

No more beer-bellies
My official weight of the week is 148, only 4-1/2 pounds less than the day of my surgery on December 2, 2005. I still hope to get back to the one-seventies.

(Wednesday Jun 28, 06)

All is going very well
I continue to feel terrific everyday! I am able to eat anything I want and not feel ill. And I am able to tolerate larger portions at one sitting. I did have two episodes during work in early June where I had some really bad abdominal pains. I have learned to work through the pain so as awful as it was for a few hours I stayed at work until it passed. It's been over two weeks since I had those episodes and I don't anticipate many more reoccurrences.

My next big test
My next PET scan is July 18. I need to pass this test with flying colors. I will get the results during my oncology appointment two days later.

A personal goal
I want to go from the deepest depth of my health one year to the highest peak the next. Therefore I have given myself a personal goal of running (and hopefully completing) a marathon in 2007 if my health allows. I don't care if I cross the finish line running, walking, or crawling. I have never even run a 5K so it will be quite a challenge for me. It's a challenge that I am looking forward to. Now if I can only get rid of the tingling in my feet which are the only side-effects that I am experiencing these days.

(Added: Thursday July 20, 2006)

(Saturday Jul 1, 06)

Anybody want to buy a used pair of boys medium swimming trunks?
There was a chance that I was going to go lake swimming today so I tried on the swimsuit that I purchased in May at our Disney Hotel gift shop. I was pleasantly surprised that it was too small for me. In fact I couldn't even get it over my hips. It was a refreshing change from having my pants fall down to my ankles because they were too big (correction... I was too skinny).

(Sunday Jul 16, 06)

You gain some, you lose some
I lost three pounds this week for no apparent reason. I felt well and ate as much as I usually do. I expected to have some weight-loss weeks every once in a while as I anticipated the last twenty or so pounds would be more difficult to gain than the first.

(Monday Jul 17, 06)

Just a little off the top please
I had my first haircut today in nearly six months. It was great to see my stylist again and she was excited to see me too. She was surprised to see how different my new crop of hair is compared to when she last saw me. For the first time in my life I actually like my hair. It used to be so thick and coarse in texture that it would just stick straight up. I couldn't do anything with it. Now it's thick in density but very soft in texture with a little bit of curl where I've let it grow a bit longer. It has also come in darker, almost black, with some light streaks down the top that looks like hair highlights. Today's haircut took away what little curl I had and most of my lighter tones. We'll see what happens when it grows longer again. I use to get my hair cuts every two weeks. Time will tell if my hair will continue to grow at that rapid pace. To know me is to know that I hated my hair so I hope I can at least get one positive thing out of this whole cancer-thing.

(Tuesday Jul 18, 06)

Another expensive PET CT Scan
This scan will determine if the cancer has returned. I left my car key in my pant pocket when they started the scan. Fortunately the do a "scout" which is a quick scan to make sure idiots like me didn't leave metal in their clothing. Once that was removed, the scanning began. It was 25 minutes of lying as still as possible as the donut-shaped apparatus slowly scanned me from my neck down to my legs. My hands had to remain over my head during the scan. It didn't take long for the blood to rush out. At first my arms felt numb, then I lost all sensation in them but I was able to keep them still. It didn't matter too much because they were outside the scan range.

(Thursday Jul 20, 06)

The results are in...
Fortunately my oncologist does not see any areas of concern from my PET scan. Cancer lights up brightly on these images and is apparently quite distinguishable from non-cancerous areas. She allowed me to see the scan images which I find very fascinating. There is one new spot at the throat, possibly near lymph nodes, that has appeared since my last PET scan in April that they will closely monitor. It may just be irritation from my throat dilation in early May.

My next PET scan will be September 18th with an oncology appointment on Sept 21st to get the results. Originally I was going to be getting my third post-chemo PET scan three months apart. However my oncologist wants my next one to be two months from now to make sure the watch-area is not turning cancerous.

The nurse for my oncologist was very happy that I looked so much better than I did three months ago when she last saw me. In fact, she told me today that she couldn't even recognize me at my last appointment when she looked for me in the waiting lobby. That was in late April when I was a measly 120 pounds. Today I weigh in at about 153.

Even though I was extremely concerned about getting the test results today, I did not get as stressed out and sick to my stomach as I did with the test results three months ago. Fortunately I was very busy at work before leaving for my appointment. A busy mind is a good thing in this circumstance. In some ways I was more concerned this time because now I know how sick I can get from chemo and I did not want to have to go through that hell again. And if it had returned so quickly after ending chemo treatments it meant that I was dealing with a very aggressive cancer. It's an almost indescribable feeling to know that you will soon be getting news that could determine the quality and length of your life.

My oncologist told me that she recently met with other oncologists to discuss treatment for esophageal cancer. She shared my early-success story with the group and they concluded that they would use my treatment as their new standard for future patients. I was the first esophageal cancer patient for my oncologist to request and receive more chemo than the typical treatment course. She told me that she has now treated three of four new esophageal patients as I was treated. She called me a trend-setter. I hope that others have the early success that I have had and that I may have played a small, but important, role in their battle. She did say that they will keep the feeding tube in the stomach throughout the chemo treatment in case they get as sick as I did and become unable to eat and keep down foods orally as I experienced. My feeding tube was removed in late December, about three weeks after surgery.

I told her that the only side-effect that I experience these days is the tingling or numbness in my feet when I walk. It feels similar to what it would feel like if you were to put a layer of fine sand in the bottom of your shoes, then walk around. It is by no means painful but I hope the feeling goes away soon, particularly if I start jogging soon in preparation for next year's marathon. My oncologist said that it could take up to a year for this sensation to disappear or it may last forever. I have not decided which marathon that I would like to run.

A movie review (sort of)
Last year (before diagnosis) I watched a movie called The Machinist. It's a 2004 film starring Christian Bale who plays a paranoid, insomniac lathe-operator. I watched it again last week as it is very interesting to see it again from a different perspective. Christian Bale went from his normal 185 pounds down to 121 pounds for the role. I remember being shocked when they showed how skinny he was. He wasn't even recognizable as himself playing that role. If you watch the movie keep in mind that I am one inch taller and I got down to 114.5 pounds so I was actually skinnier than he was. Yikes!!! Oh, by the way, it's a good movie too, but clearly not a movie that is suitable for everybody.

(Added: Sunday Sept 3, 2006)

(Sunday Jul 23, 06)

Back in the saddle again
I decided to get back into the dating scene again so I reactivated my profile with the same internet dating service that I was using before my diagnosis. I had to update my profile a little bit though... my body weight was "about average"; now it's "slender". I think I also changed my hair color from light brown to dark brown. My post-chemo hair is definitely darker than it used to be. And at the end of my profile introduction I added the sentence "And most importantly, I am a cancer survivor since 2006." I know that many women will not contact me for this reason alone. I didn't think it would be fair to spring that kind of news on them during a first date. So I decided to be upfront and eliminate the women that wouldn't be able to handle it. I know I would have the same concerns if the roles were reversed. I decided not to be the one to contact women but rather let the women read my profile then contact me if they can handle the word cancer.

Nachos and ice cream
I started jogging today for first time since diagnosis. I had to run in very short spurts as I tired very quickly. Also my stomach was churning. Then again eating nachos and ice cream one hour before jogging didn't help.

(Tuesday Aug 1, 06)

Emotions bubbling up to the surface
Today I really started thinking seriously about what it meant to be back into the dating scene. My biggest issue was whether I should date women that have or want children. I have always wanted children but have come to the conclusion that it's probably no longer a viable option for me (more details regarding this with my August 7th diary entry).

I also wondered how many women would want to date me with my very uncertain future. Honestly, I wasn't expecting very many women to contact me through online dating. Thinking about this made me go back onto the internet to refresh my memory about "my odds". And looking at the statistics reminded me how scary this cancer is and completely bummed me out for at least a week.

(Wednesday Aug 2, 06)

Tonight I went out to a club with friends to listen to live music. I was really having fun for most of the night. My friends were out dancing. I wasn't in the mood for dancing but it was fun watching everybody dance and listening to the band. And then I started feeling very sad, thinking about how much fun this was and wondering how much longer was I going to be alive to enjoy things like this. Reminder: I was still bummed out from going out to the internet yesterday. My friends were out on the dance floor while I was getting emotional. I didn't want it to ruin their evening so I kept my emotions under control and didn't talk about it.

(Wednesday Aug 2, 06)

Today I wore my new "I (symbol of a red heart) my oncologist" t-shirt at the Uptown Art Fair. At first I felt uncomfortable when I received a long look from a man sitting at a sidewalk café who apparently read my shirt then looked at me. I would much rather blend in with the crowd than stick out so wearing a shirt like this was out of character for me. But it didn't take long for me to feel comfortable wearing the shirt. I think wearing the shirt gave me a sense of pride that I am a cancer survivor (even though I don't like the term "survivor").

(Monday Aug 7, 06)

I replied via e-mail to about six women that contacted me through my online dating service that have or want children. Here is the letter I composed and sent to them:
As my profile states, I am a cancer survivor since this year. Last September I was diagnosed with esophageal cancer. I didn't even know what an esophagus was when I was diagnosed. I do not fit the profile of a typical patient with this uncommon cancer. I am much younger than most and have never smoked but somehow I got it. I guess I picked the short straw. I have undergone major surgery and a lot of chemo and radiation. And this spring I got VERY sick from chemo. I lost a lot of weight, getting down to a weight of 114 pounds. On a 6'-1" frame, it was very shocking. I have bounced back strong in the past three months and have gained an amazing forty pounds. Unfortunately this cancer has one of the worst survival rates, even worse than lung cancer. The great news for now is that the doctors do not see any cancer from my last test results a few weeks ago. --- Yeah ---

I don't know what my future has in store for me and of course that horrifies me. A few weeks ago I renewed my (online dating) membership. I was also a member before my diagnoses. Almost everything about my life is different now. Previously I wanted children. Now I don't think it's a good idea. I lost my mother to cancer when I was 16. Since joining back with (online dating) I have struggled with some very important issues. The one thing I that I have the most concern abou