"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 about is dating women with children. I am looking for a serious relationship as I'm sure you are, possibly even marriage. I don't know how long I will be healthy or how many more years I have left. Nobody does but it's different when you are diagnosed with a serious illness. I am really having a difficult time knowing that I could put a child through the loss of a father or step-father. For this reason I have decided that I should not have children of my own.

I don't know how this is coming across to you. I hope you can understand. As you probably noticed, it has taken me several days to reply to your e-mails. Typically I would respond immediately but I have struggled with this very important issue.

I just had a woman contact me that is also a cancer survivor and does not have or want children, possibly for the same reasons. I have not met or spoken with her yet but we are meeting each other this week. Dating after cancer just plain sucks! I don't know if I am approaching this in the best way but for now I think it would be best for me to date women who are also survivors. I think cancer survivors will be able to better accept the risks involved with building a relationship with very uncertain futures. As I said, I am early into this dating-thing since getting cancer. Perhaps I will approach it differently down the road. For now this is what I need to do.

I wish you the very best and I hope you find all that you are looking for in life!

Mark

(Friday Aug 11, 06)

The first date
Tonight was my first post-diagnosis date. Yikes! But I was looking forward to meeting her. She is a 36 year old, three year breast cancer survivor. I wanted the date to be fun so my plan was to not bring up the topic of cancer. My plans quickly went out the window. I ended up talking about it more than I wish I would have. Fortunately I spared her the ugly details about how sick I got during chemo. Still it's not a fun first date conversation but I guess it consumes so much of my life and thoughts that I couldn't avoid bringing it up. We even had the same radiologist. Now that's having too much in common if you ask me.

One of the women that I replied with my "no children" letter was a divorce attorney that said "the other thing that you may want to keep in mind is a principle of AA....don't get involved in a serious relationship until you are sober (in remission) for at least a year....to do so before that tends to ignore the problem...or overly focus on it..." Perhaps she is right. Maybe I am jumping in too soon but I guess I want my life to be as close to normal as possible. I enjoyed meeting this woman tonight and hope she wants to go out on a second date. I sent her an e-mail two days later that contained the line "I promise I won't talk about cancer next time. And if I do, kick me in the shin and tell me to zip it."

(Wednesday Aug 16, 06 – give or take a day or two)

I continue to jog/walk about 1/2 hour each day. I wish that I enjoyed jogging but for now I don't. For the past few days I have tried to run a little bit further with my initial burst of energy. Today I jogged my longest non-stop stretch to date of 1/2 mile. It's a long way to go if I'm going to make my goal of running a 26.2 mile marathon next year. But I continue to be proud of my baby-step progresses.

(Friday Aug 18, 06)

Going cruisin'
Today I booked a stateroom with my brother Scott for a six night Western Caribbean cruise for the end of next February. Our port of calls will be Key West Florida, Cozumel Mexico, George Town, Grand Cayman, and Montego Bay, Jamaica. My sister Lisa, her husband Kevin, my niece Bailey, and nephew Logan booked a stateroom a few days ago. This will be my first cruise and I'm looking forward to it.

(Thursday Aug 24, 06)

So that's what it looks like
Tonight I went to the Body Worlds exhibit at the Minnesota Science Museum. The exhibition features about 200 authentic human specimens, including entire bodies, individual organs and transparent body slices that have been preserved through the process of Plastination, a technique that replaces bodily fluids and fat with reactive plastics. It was a fascinating exhibit! And I was able to see up close what an esophagus looks like.

(Tuesday Aug 29, 06)

Face-to-face with a spinny ride
I went to the state fair today. My friends went on a wild ride that spins you upside down and rotates you in every direction. I have not been on an intense ride since my surgery. Now that I don't have an esophagus to keep everything in my stomach, I certainly didn't want to test the waters with this ride. I still need to find out whether I can handle the spinny, upside down rides without losing my lunch. As fun as it looked, I watched from the sidelines.

(Thursday Aug 31, 06)

The debut of my other new shirt
Today I wore a long-sleeved shirt at my sister's house imprinted with "I killed cancer". It's a great shirt and I feel proud wearing it knowing what I went through to kill my cancer.

(Sunday Sept 3, 06)

An adventure of a lifetime
This week I have seriously considered going on a trip with National Geographic Expeditions to the Galapagos Islands located 600 miles of the coast of Ecuador and/or Machu Picchu and the Amazon Rainforest. These expeditions are guided by an expert with National Geographic Society. The trips are expensive but would be amazing! I don't know anybody that would be able to go with me so I may end up traveling solo. National Geographic does provide the service of trying to join single travelers which would save me about $3,000. I am looking at departure dates for this September, October, or November as I have several weeks of vacation at work that must be used by the end of November. I am treating this as an adventure of a lifetime. I want to travel the world as much as I can while my health (and pocketbook) allows.

A summary of the 12 day expedition 'Machu Picchu and the Amazon':
The mountains and jungles of Peru offer a wealth of Spanish colonial cathedrals, Inca temples, remote rain-forest habitats, and breathtaking Andean vistas. Discover the magnificent old capital of Cusco, hike to ruins in the Urubamba Valley, explore incomparable Machu Picchu, and encounter red howler monkeys and spectacular birds in the Peruvian Amazon rain forest.

A summary of the 10 day expedition 'Galápagos Islands':
The Galápagos archipelago, Darwin's living laboratory, is host to an abundance of wildlife. Isolated from the mainland for millions of years, it is one of the rare wildernesses where animals have no instinctive fear of humans. Experience an up close, personal encounter with many unique species, such as flightless cormorants, marine iguanas, and domed giant tortoises.

In conclusion of this journal entry:
I hate my post-chemo hair even more than I did before my hair loss. My stylist and I both think it's growing even faster and thicker than it use to. I still have to get my haircut every two weeks. I can control my hair for about five days after haircuts. After that my hair does what it wants to do, not what I want it to do. I am very glad to have hair again though.

I continue to jog about five days a week. I might be pushing the definition of jogging since I run in very short bursts. I am happy with the strength that I have gained in my legs but I am concerned with my lack of respiratory progress. I get winded easily and have to stop jogging to catch my breath. Half way through my chemo and radiation last year I started to feel very uncomfortable from chest pressure. I may be experiencing remnants from my treatments. I will ask my oncologist during my next appointment. I hope that I will soon see improvements with my breathing and lung strength. If not, my goal of running a marathon next year could be in jeopardy.

I realize that many people reading this posting of my journal will be concerned that I am living my life with the expectation that my diagnosis will eventually become terminal. And to be completely honest, I am. I will continue to fight this with all the strength that I can muster. For now I will live my life knowing that I may not see my fifties. I give this a lot of thought while walking alone. I wish my thoughts wouldn't go there but I think they do each and every time. I know a day doesn't go by where I don't think about my mortality many times.

Weight: I have hovered between 150-155 pounds since the first week of July. I can't seem to get over the 155 pound hurdle. I wish I could gain and maintain another 10 pounds.

I continue to feel great and am able to eat and drink whatever I choose! --- Yeah ---

My next PET scan is September 18. I get the results on the 21st.

(Added: Thursday September 21, 2006)

(Tuesday Sept 5, 06)

Too close to home
A friend of a friend died today of esophageal cancer. I met this man last October over dinner. I enjoyed my brief time with him and instantly liked the man. He is one of those types of people. I understand he always sported an infectious smile despite battling Hodgkin 's disease in his 30's, a heart condition later in life, and being diagnosed with cancer in 1998. He looked great when I met him. Unfortunately he took a sudden turn for the worse over the past few weeks. Before his death, I told myself that I wanted to attend his funeral. I decided tonight that I was not emotionally ready for this. It was hitting too close to home. My mind still frequently goes to the dark place where I think about my own possible early death. I was afraid the funeral would only make matters worse.

(Wednesday Sept 6, 06)

A trip of a lifetime
I booked my trip to Galapagos Islands. I will be traveling solo but expect it will be an amazing trip of a lifetime. In early November I will fly to Quito, the capital of Ecuador for two nights. I will then fly to an airport on one of the islands of Galapagos where we will board an eight-cabin yacht. We will island hop on the yacht for seven nights. Our small group will do two excursions together each day where we will hike volcanoes, sea kayak, snorkel, and possibly swim with penguins, sharks, and whales. I will be thrilled if I have the opportunity to be in the water with sharks! I only hope I can actually do it when the time comes as I'm looking down into the water with sharks passing by. I might be talking a big talk now. The more I read up on Galapagos, the more excited I get about my trip!
Here's a link to my tour operator & Galapagos tour: http://www.mtsobek.com/features/Galapagos/
And the boat I will call home for seven days: http://www.reinasilvia.com/

And then the day got worse
Immediately after booking my trip I joined up with friends for a rooftop dinner at a nice seafood restaurant. I enjoyed a drink that contained pomegranate juice. Half way through the dinner I began to experience sharp abdominal pains. I made it through dinner and post-dinner conversation without my friends realizing that I was in pain. I had not seen two of these friends in a 1-1/2 years and was enjoying our time together. I didn't want "a little" pain to ruin the evening. The pain continued to get worse. The walk to my car was horrible. I thought I was going to pass out or vomit as I approached my car. I waited in my car for 15 minutes for the pain to subside. It wasn't. I so badly wanted to be home and lie down that I drove despite the pain. I probably shouldn't have. The ride home was rough. I thought I was going to have to pull over at one point but I managed to get to my destination. I took a nap for about an hour. The pain subsided by midnight. I had not experienced a pain like that in months and although it wasn't the strongest pain I've been through, it ranked up there in the top three. I seem to recall having some pain in the spring after drinking pomegranate juice. If that's the case, pomegranate juice is the only food or beverage that is causing me problems. Although pomegranate juice contains antioxidant chemicals that may have cancer-preventing benefits, I'm going to keep my distance, thank you very much.

(Sunday Sept 17, 06)

Time to improve my diet
I have come to terms that my weight will likely always be in the lower 150s. As much as I would like to gain another 10-15 pounds, my weight has fluctuated between 150 and 155 pounds for 2-1/2 months. In the past I was more concerned about my weight so I ate whatever I chose to. Now it's time to eat healthier. My goal is to eat more foods that are thought to help reduce the chance of cancer. This week I also started (slowly) back into using my weight machine to build more upper-body strength. I continue to walk or use my elliptical machine at least 1/2 hour each day. I have not been good about jogging, partly because the weather has been cold and rainy lately and likely the main reason; I don't enjoy it at all.

(Monday Sept 18, 06)

Another test I cannot afford to fail
I had my PET scan this morning. It was relatively uneventful except my blood sugar count is high at 133. The woman that drew my blood told me that I should discuss this with my doctor. It's now on my list of questions for my oncology appointment this Thursday. I am nervous about getting the results. I will always be scared wondering when cancer might thrust back into my life. One reason for my concern is that my chest has felt a little different over the past few weeks. It has been uncomfortable sleeping on my sides. I was unable to sleep on my side while going through chemo. Lately it hasn't been as uncomfortable sleeping as during the chemo-days but it has me concerned that something just doesn't seem right. Of course I have wondered more than a few times if my chest is now full of cancer. I started eating healthier today. However I did eat one small plate of chips w/cheese then tossed remaining chips in the garbage. It's a start.

(Tuesday Sept 19, 06)

Not wanting to hear the phone ring
With today being the day after my PET scan, at least one person at the facility that administers the scan knows if my cancer has returned. My oncologist will likely get the results today too. I do not want to see a phone call come in from Park Nicollet Clinic. My fear is that the results are bad and they need to tell me before my oncology appointment.

I went most of the day without the call but then the phone rang at 5:13 pm with display text reading "Park Nicollet Clinic". I had a brief moment of concern. It was a woman from the clinic reminding me of my oncology appointment on Thursday. Relief to say the least!

(Wednesday Sept 19, 06)

A bad day at work
Shortly after breakfast I started getting abdominal pains. I went to work anyways where it continued to get worse. It's very odd to me how it can hurt one moment, have the pain go away for a few minutes, then return. It was doing this for about two hours before subsiding. Next time this happens I will rest it off before going into work. I wondered what might have triggered it this morning. The only unusual thing I had for breakfast was 100% grape juice. I never buy grape juice but last night I did since it's been a while. I needed to find out if this was the culprit so I drank the juice again during dinner. I had a little discomfort but no big deal. So I don't think it was the juice. I might have forgotten to take my daily OTC Prilosec this morning. I have forgotten in the past without problems. Who knows? It may have nothing to do with what I eat.

(Thursday Sept 21, 06)

An e-mail I sent out to many of my friends and family:
Unfortunately I received very bad news today from my PET scan results. The cancer has returned and is probably incurable. I probably have less than two years to live. For now, please do not communicate with me via e-mail, voice, or text. I need time to absorb this. Of course it's very overwhelming. I will let you know when I am ready to communicate. It may be hours or days.

Mark

(Added: Tuesday September 26, 2006)

(Thursday Sept 21, 06)

I was numb as the oncologist told me the dire news. She told me that the cancer had popped up in a few new areas. She may have said where but my mind was elsewhere. I knew my diagnosis would eventually be terminal for me. I just had that feeling and I did enough research to know that the odds were not in my favor. I was hoping for a few more good years though.

I cried over the phone as I told my family members. I tried to lie down to get some rest this afternoon but couldn't. I felt like I needed to be doing something. Not sure what though? I did have a brief breakdown. I decided that I needed to be with my siblings so I went over to my sister Lisa's house. I played games with my niece Bailey while Lisa watched my nephew Logan's football game. I wanted to see his game but it was rainy and cold and I knew there would be friends that I made through Lisa that would be in the stands. I didn't want to talk about my situation yet. I really enjoyed playing with Bailey. She won at 'Mastermind' and 'Guess Who?' but I won at 'Connect Four'. My sister Becky came over and we enjoyed chow-mien. Then Becky, Lisa, and I played 'Phase-10' before I left for home. As a truck driver, my brother Scott was on his way to Milwaukee so he was unable to join us.

I know that I will not be able to see my niece and nephew grow into the fine adults I know they will be. That saddens me to no end. I asked Bailey what three things (jobs) she might want to do when she grows up. It was like pulling teeth to get an answer from her. I eventually got an answer of veterinarian and then teacher. At that point I think she just came up with any answer just to get me to quit asking. Whatever she ends up doing, I know she'll make me proud to be her uncle. I love her dearly!

I exercised tonight --- thought I still needed to do what's best for my health. I was actually able to smile and laugh during reruns of Will & Grace and Friends.

(Friday Sept 22, 06)

I didn't sleep well at all last night. I am sad, scared, and don't have any idea what I should be doing.

I had a needle biopsy into my chest cavity this morning. There is a small amount of liquid that they want to determine whether it contains cancer. They used ultrasound to locate the liquid. It was good to hear the doctor say that there was a small amount of liquid. Then he continued to say; but that makes it more difficult to find the liquid and there's a greater chance of accidentally puncturing the lung, causing a collapsed lung. He said a collapsed lung is manageable but didn't sound all that fun to me. I was warned before the procedure there would be two very painful needle injections, the anesthetic and the needle biopsy itself. Fortunately, with a few local shots of the anesthetic, it wasn't that painful. It was mighty unpleasant though. I still think I have a high tolerance for pain. I will find out the results of this biopsy and my treatment options at next Tuesday's oncology appointment.

I cancelled my online dating service today. I sent the following note out to a few women that have contacted me over the past few weeks that I had not responded to yet.
I am sorry that it has taken so long to return your message. I have had a lot on my mind lately. My health has suddenly turned for the worse. I have decided to end my membership with Match. I hope you find everything you're looking for in life.

Mark

(Sunday Sept 24, 06)

The sadness of the week caused me to lose five pounds this week, back down below 150 pounds. Today I went over to Lisa's house again where my cousin Edi, her husband Joel, friend Jolene, and my brother Scott joined us. Becky wasn't feeling well enough to make it. We really enjoyed our time together. I tossed a football around with Logan twice. It was a beautiful day and I really enjoyed being outside playing with him. I asked Logan what three things he wants to be when he grows up. He answered a football wide receiver, cornerback, or safety. A couple years ago I would have guessed that I would see him as a professional baseball player. I know he will be an amazing man whether he goes into sports or not. For those that don't know him now, don't be surprised if you get to know him through professional sports. He's a natural. I love him dearly!

(Tuesday Sept 26, 06)

Today is the one year anniversary of my diagnosis. And ironically, almost down to the minute, one year later I'm being told that I have months to live.

Before I received the bad news last Thursday, my plan was to read my journal in its entirety today, on this anniversary. I have not gone back to read any of it yet. I thought it would be good to look back and remember that even though I went through some very difficult days, that I was able to overcome. Now it would be too painful and frustrating to know that I went through so much and was only able to get a few healthy months out of it. I knew how bad esophageal cancer was. I just cannot believe how aggressively it's attacking me.

So it's late in the morning and I'm about two hours beyond the stark reality of what's in store for me. I called only one friend and a few family members. We're all in shock, of course. I knew from last Thursday's appointment that it was really bad so I was prepared for the worst today.

The fluid in my chest cavity is cancerous, with 3-4 spots lighting up as cancer. The cancer has also gone into lymph nodes of my abdomen and liver. It's unbelievable how quickly it has spread in such a short time. I am now at stage IV, the worst possible stage, meaning the cancer has spread to other major organs of the body.

If I didn't do any treatment, I would only have about six months to live. I would start feeling sick in 2-4 months. That was unacceptable! I asked what would be the most aggressive treatment. My oncologist said that surgery is not an option as it has spread too much. Possibly radiation, but not in the same region where I had prior radiation.

Tomorrow I start an I.V. chemo called Docetaxel. I have four of these treatments scheduled three weeks apart. At some point I will also start an oral chemo called Xeloda. At the very best, this treatment may give me 15-24 months of life. I hope that I feel fairly well for most of my remaining days.

I asked what my last days/weeks would be like. I need to know. It depends how the cancer spreads. If into my lungs, I will feel short of breath. They will likely have to drain fluid that collects in my chest (or lungs?). I will be fatigued and it may become difficult to eat. They should be able to control the pain.

I called the travelers insurance company handling my November Galapagos trip. I don't have to cancel it now. I can cancel it up to the day of departure and can claim it with the insurance company anytime. I will go if I'm feeling well enough and my doctor thinks it's safe for me to travel. I am not expecting to be able to make the trip. I hope that I'm feeling well enough to go on my Caribbean cruise at the end of February. A lot can happen to me in the next four months.

For now I would prefer not to discuss this matter unless it's on my terms. You do not need to try to come up with the "right words" next time you see me. A simple "hello" is best.

For all of my wonderful friends and family who have supported me throughout my struggle and have always loved me; I thank you and love you very much!

(Added: Monday Oct 2, 2006)

(Wednesday Sept 27, 06)

Let the chemo begin
I got nauseous about 15 minutes into the chemo itself (not the pre-meds). I was gagging as if ready to vomit but nothing came out. The nurse administered anti-nauseous I.V. meds including Zofran. I was then able to complete the chemo. I think it may have been psychosomatic. Just the thought of how sick I got from chemo this past spring might have triggered it. They gave be Benadryl which made me sleepy so I went home took a nap. It's 10:00 pm and I'm feeling great so far. Hopefully I can say the same over the next few days. I plan to go to work tomorrow morning. I am taking the following chemos: Docetaxel (I.V. drip) and Xeloda (oral chemo). I have four drips of Docetaxel, three weeks apart. I take the Xeloda (four pills - twice a day) for the first two weeks after Docetaxel then I take one week off before repeating the Docetaxel/Xeloda cycle.
Docetaxel (trade name Taxotere) was approved by the Food and Drug Administration (FDA) in 1996. Docetaxel promotes the formation of microtubules that do not function properly. One of the roles of normal microtubules is to aid in the replication of cells. By disrupting this function, Docetaxel inhibits cell replication. Docetaxel is an antineoplastic agent (inhibits or prevents the growth and spread of malignant cells) used to treat breast cancer and non-small cell lung carcinoma.

Side effects of Docetaxel
Suppression of bone marrow function is the principal adverse side effect associated with Docetaxel treatment. Blood tests will allow a doctor to determine if there is adequate bone marrow function to begin or continue treatment. Hypersensitivity and fluid retention may also occur during treatment. Corticosteroids are administered prior to treatment to help alleviate these side effects. I don't know if I was given Corticosteroids. Ulceration of the mouth and surrounding areas is possible. Additional side effects, including fever, decrease in blood pressure, nausea and vomiting, diarrhea, pain, abnormal liver function, skin rash, nerve damage, and hair loss (alopecia) may occur.
Xeloda has been on the market since 1998. It was the first oral chemotherapy approved by the FDA for the treatment of metastatic breast cancer. Metastatic defined is when a disease spreads from its initial site to other parts of the body. In 2001, it became the first oral chemotherapy approved for the treatment of metastatic colorectal cancer. It received FDA approval for the treatment of Dukes' C (Stage III) colon cancer in 2005. Xeloda is approved to be taken along with my Docetaxel in metastatic breast cancer. There are studies underway to see how XELODA works with other drugs and in other cancers.

Side effects of Xeloda
Diarrhea, nausea, vomiting, stomatitis (mouth and throat sores), abdominal (stomach area) pain, upset stomach, constipation, loss of appetite, and dehydration (excessive loss of water from the body). These side effects are more common in patients who are 80 or more years of age. 'Hand-and Foot syndrome', pain, swelling or redness of your hands or feet that prevents normal activity, rash, dry, itchy or discolored skin, nail problems, and hair loss. Tiredness, weakness, dizziness, headache, fever, pain (such as chest, back, joint, and muscle), difficulty sleeping, and taste problems

Gotta get back into exercising
I started exercising again after one week off. One of the concerns I had was whether exercising could spread the cancer cells from the fluid in my chest cavity. I was told by my oncologist that the chemo would find these cells wherever they were and that I should continue to exercise.

Yesterday a friend recommended that I look into Organic Blackstrap Molasses. I did some research on the molasses and found the following statement on www.innovitaresearch.org:
Blackstrap molasses, its most concentrated form, was used for the therapy of a variety of diseases, including cancer. Anecdotal evidence suggests that cancer was very rare among sugar cane plantation workers who were regularly consuming the raw brown sugar. Blackstrap molasses is rich in a variety of essential minerals including iron, zinc, selenium, magnesium and potassium as well as the majority of the vitamin B complex, deficiencies of which confer a major cancer risk. Molasses also contains high concentrations of amino acids and linoleic acid, an essential lipid that has a documented anti-tumor effect.

I ordered four bottles of this molasses online. As long as I can tolerate the taste, it couldn't hurt.

I also ordered a Chinese herb Dong Ling Cao (Rabdosia rubescens). I had heard about this herb from an 'alternative and complementary treatments for cancer' book I checked out at the local library.

A doctor from India who wrote books "Fight Cancer with Herbs" and "Cancer & Herbs" claims on his website www.cancercliniconline.com that:
Rabdosia rubescens (Dong Ling Cao) is used in China to treat cancer. A study conducted on 115 patients suffering from non-resectable oesophageal cancer has shown that the survival period of these patients prolonged by 300 percent after administration of Rabdosia rubescens in combination with the conventional treatment.

From www.cancer.org (American Cancer Society):
Rabdosia rubescens is a Chinese herb promoted as a treatment for cancer of the esophagus. In the past few years, several lab studies have shown that 2 extracts of Rabdosia rubescens, called oridonin and ponicidin, have some activity against cancer cells in the test tube. Oridonin has been tested against breast, prostate, and ovarian cancer cells; leukemia cells; and melanoma cells from mice. Most of these studies were done in China or Japan, and all showed activity against the cancer cells. Ponicidin was tested in the lab against human leukemia cells in China and found to help induce cell death (apoptosis.) Even though laboratory studies may show promise, further studies are needed to find out if the results apply to humans.

Other extracts from the herb are in earlier stages of study. No cancer studies using the whole herb were available. Extracted compounds are not the same as the herb, and study results are not likely to show the same effects. More research is needed to find out what role, if any, these substances may have in cancer treatment.

(Thursday Sept 28, 06)

Need to earn a living
Went back to work today, full-time.

(Saturday Sept 30, 06)

Weaning off the meds
I was told to take anti-nausea meds for the first three days following the start of chemo. Today is the first day that I did not take these meds. Fortunately, I felt very well throughout the day. I was also subscribed Ativan which helps people sleep during chemo treatment. Ativan, the brand name for Lorazepam, is an anti-anxiety drug. This drug is a mild tranquilizer as well as a sedative. It is highly addictive and its regular use may lead to psychological and physical dependency. I did not want to have to rely on Ativan to fall asleep so I did not take one tonight. I went to bed at midnight but did not fall asleep until around 7:00 am. I might have dozed off for a few minutes here and there but I definitely watched most of the time tick away. It was extremely frustrating. I could have made it easier on myself by taking an Ativan, but didn't.

(Sunday Oct 1, 06)

Sleepy Sunday
After a sleepless night, I got out of bed around 8:00 AM to take my oral chemo pills. These pills are to be taken with food so I had breakfast and hit the sheets again. At this point I was physically exhausted. I slept fairly decently from about 9:00 am to 3:00 pm. I woke up tired and in a funk. I had not motivation to do anything. It was a beautiful, warm autumn day. I forced myself out of the house and walked across the stone arch bridge over the Mississippi then along the river for about 1/2 hour. The Minnesota Twins had just won the American League Central championship a few hours prior so there was a lot of excitement in the air. People were honking their car horns and waving homer hankies out their windows. Honestly, I was jealous that they had reason to celebrate. I took 1/2 an Ativan tonight. Tomorrow is a work day and I need to get a good nights rest.

I was able to reclaim 1-1/2 pounds this week.

(Monday Oct 2, 06)

I continue to feel very well throughout the days. I still have discomfort while lying down, particularly on my sides. That fluid in my chest cavity concerns me. My oncologist is hoping the chemo reduces this fluid. My departure date for Galapagos Islands is one month from today. Now, more than ever, I really want to make this trip a reality. My next PET scan is November 30 to see if the chemo is doing any good.

(Added: Oct 11, 2006)

(Wednesday Oct 4, 06)

I am very concerned about the feeling that I have in my chest. It seems to be getting a little worse each day. My breathing seems to be a little heavier. I scheduled a medical appointment for tomorrow to address my chest concerns. I woke up at 3:00 am and took 1/2 an Ativan. It seems that lately I have to take Ativan to get quality sleep.

Possibly another major decision
If I go on my trip to Galapagos, it would extend my third chemo "injection" by at least five days. My oncologist is currently out on maternity leave for about two months. I talked to the nurse of my "substitute" oncologist who said he does not recommend that I delay my third treatment. Now I have to decide which is more important, this trip of a lifetime or a timely chemo schedule. Is this trip worth a risk to my health? I'm afraid that if don't take this trip now that I will never feel well enough again to do so.

(Thursday Oct 5, 06)

More tests
I had a chest X-ray this morning. Fortunately they do not see any chest fluid. I was afraid the amount of cancerous fluid was increasing. The Nurse Practitioner told me that it's possible that liquid could be surrounding my heart, causing my discomfort, so she had me do an EKG. An EKG is an electrical recording of the heart and is used in the investigation of heart disease.

My white blood cell counts are very low which is common one week after I.V. chemo. This puts me at a higher risk of infection or illness. I will have more blood drawn on October 11 to determine if the counts are increasing as they should.

I cry much less frequently each day. I honestly don't know if this means that I'm beginning to accept my fate.

(Friday Oct 6, 06)

A different, yet fun, kind of scary
My "gang" of friends (Jolene, Patty, Nathan, and Louis) invited me to join them at ValleyScare. Actually this is Valleyfair, our local amusement park, with added scary attractions for Halloween. I arrived at the park early and parked my car facing two extreme roller-coasters. Normally I would be very excited to ride the coasters but this was going to be my first experience without the part of the esophagus that helps keep food-matter within your stomach. Would the steep drops of the coasters and a ride called Power Tower cause the contents of my stomach to slide out? Power Tower is a ride that thrusts you down nearly 250 feet at a velocity of 50 mph in three seconds. It's an intense ride even with a complete esophagus. I watched these thrill rides with concern. I brought a small plastic bag as a barf-bag substitute if needed at the last moment. Fortunately I was able to handle all of the rides without any problems. We had a lot of fun tonight. Very recently I wondered if I would ever have the chance to ride a coaster again. This may seem minor to some but for me it was a big deal.

(Saturday Oct 7, 06)

A very good afternoon
I had a great afternoon with my niece and nephew today. It was an unusually warm (80's) and windy autumn day. We hiked up to the top of a 340' bluff called Barn Bluff in Red Wing Minnesota. It boasts a beautiful view of the Mississippi River on one side, the small town or Red Wing on the other, and all surrounded by the Mississippi bluffs of Minnesota and Wisconsin. There was enough fall-colors on the leaves to make it even more spectacular. The kids did so well with the hike and seemed to enjoy it. And I was pleased that I was physically able to handle the hike. It gives me hope that I will be able to manage the adventurous excursions that (hopefully) await me at Galapagos. We completed the afternoon with a round of putt-putt golf. I promised Bailey and Logan three bucks if they got a hole-in-one. Bailey was able to reduce my wallet by six bucks. Logan had an off day --- he's usually good for at least one hole-in-one.

(Sunday Oct 8, 06)

An unpleasant list
I started a "Things to do before I die" list. This is not a list of places I wish to visit, people I want to see, or fun things that I want to do. Rather it's a list of personal and professional things that need to be done before I die. For example: Make arrangements for my cremation, complete a Health Care Directive, select a hospice program in case it gets to that point, and gather information that my siblings will need to cancel my accounts. I took the role of canceling accounts when my father passed away and it was a complete nightmare. He was not organized. He had paperwork all over the place. I didn't know where he had active accounts. I'm going to make this unpleasant chore much easier.

(Monday Oct 9, 06)

The echocardiogram
I had an echocardiogram today. An echocardiogram (also called an echo) is a noninvasive (the skin is not pierced) procedure used to assess the heart's function and structures. A transducer (similar to a microphone) sends out ultrasonic sound waves at a frequency too high to be heard. When the transducer is placed on your chest at certain locations and angles, the ultrasonic sound waves move through the skin and other body tissues to the heart tissues, where the waves echo off of the heart structures. The transducer picks up the reflected waves and sends them to a computer. The computer interprets the echoes into images of the heart walls and valves. It was fascinating to watch my own heart beat. Fortunately I do not have any heart-related problems.

(Tuesday Oct 10, 06)

This is not what I wanted to see this morning
I noticed my hair is starting to fall out easily and I have less facial hair this morning. It really upsets me to think that I might have to go bald again. I really don't like my appearance without hair.

Radon 101
Radon is a cancer-causing, radioactive gas that cannot be seen, smelled, or tasted. Nearly 1 in 15 homes in the US are estimated to have elevated levels of radon. Radon gas comes from the natural decay of uranium in rocks and soil. It is harmless when it escapes into the air but can be a deadly threat when it seeps into your home or work environment. If you have well water, radon in the water can enter into the living areas by escaping into the air when faucets and showers are in use. Radon is the second leading cause of lung cancer, estimated at 14,000 deaths per year.

Of course I still wonder why I have cancer. I am consistently saying to myself "I cannot believe this is happening to me." There was a lot of talk about radon gas when Dana Reeve, wife of Superman actor Christopher Reeve, died of lung cancer in March of this year. She was a non-smoker. I purchased a radon testing kit at a home-improvement store shortly after her death and had intended to test my home immediately. I typically do not procrastinate but this time I did. A few weeks ago I tested my home and received the results today. I'm not going to get technical here because I certainly cannot pretend to know anything about this stuff. The results of my test were .65. Note the decimal point before the number. The Environment Protection Agency recommends that you take corrective measures to your home to reduce radon if this number is above 4.0. It also states that reducing radon levels below 2.0 is difficult. So in my simple mind, I rule out radon gas at my current home as a possible cause.

The testing lab included some interesting statistics. If 1,000 people who never smoked were exposed to a level of 1.3 or lower over a lifetime, their chance of getting radon-related lung cancer is less than 1 in 1,000 people. For smokers, the odds are not as favorable. About 9 people could get lung cancer with a radon level of 1.3 and 3 people with a level of .4. I'm trying to make this journal a little educational but that's enough about radon.

(Wednesday Oct 11, 06)

I had bloodwork this morning. My blood cell counts are still low but fortunately rising. It is important that my counts are high enough to keep my chemo treatments on schedule.

I continue my $320 a day drug habit (the oral chemo). Today is the last day of my two week run of oral chemo. I will have one week off before I start the process all over again beginning with the I.V. chemo which will likely be Wednesday Oct 18.

I have much less chest discomfort when I sleep now. I still have a feeling throughout the day in my chest that feels "different". It's difficult to explain and concerns me that this is where I will feel it most when I begin to really get ill.

Most days I think to myself "there goes another day". It's a powerful thought when you consider that I may only have a couple hundred days to live. I hate having these thoughts but they're there. In fact, it seems to always be in the back of my thoughts throughout the entire day.

My journal is now 100 pages long. Wow!

(Added: Sunday October 22, 2006)

(Thursday Oct 12, 06)

I received three pounds of the Chinese Herb Rabdosia rubescens. It looks like a two large bags of tobacco. Now I need to figure out how to intake it.

(Saturday Oct 14, 06)

I had morning abdominal discomfort which was followed by diarrhea and dry heaves. I usually take my daily Prilosec pill about 1/2 hour before breakfast. Today I took it while eating so I'm not sure if my problems were caused by the incorrect timing of taking the Prilosec.

(Wednesday Oct 18, 06)

I had I.V. chemo this afternoon. It went better than last time. I did start thinking too much about the chemo and started to get dry heaves. I was able to calm myself down after a few minutes and the nurse didn't hear me. Otherwise they might have administered Benadryl which would have made the process take more time.

My substitute oncologist is very comfortable with the chemos and treatment plan that my primary oncologist derived. He was very concerned about how dangerously low my white blood cell counts were one week after my first treatment. He wants me to get to Galapagos too. He suggested we reduce the amount of chemo for my second treatment. He said trip or no trip, he is concerned that my blood cell counts could get even lower this time because side-effects often get worse with additional treatments. With counts as low as I had, I was at increased risk of getting a life-threatening infection. Scary stuff when you consider that I have to touch germy keyboards and computer mice of other people at work. I was told to wash my hands "like a crazy person".

Tone-down chemo
I had a little less I.V. chemo today and I will do only one week of oral chemo, instead of two as originally planned. That will give my body one week without oral chemo before my trip. Hopefully, it will increase the chance of me feeling well enough to travel. I will also get a Neulasta shot after my week of oral chemo to help boost my blood counts. My third treatment will be delayed five days. It will likely be the day after my return from Ecuador. The oncologist was not concerned about the delay because it is common to postpone treatments for reasons such as low white blood cell counts.

My lungs sounded good during my exam.

Hugs-only policy
I had a flu shot today. The oncologist scared me a little bit when he talked about my low white blood cell counts. So I'm back on a hugs-only greeting policy.

Hair loss continues
I continue to lose hair at a descent pace but have decided not to shave it all off. It doesn't seem to falling out as evasively as it did with the chemo I had this spring. I'm going to try to keep as much hair as I can. Hopefully I can hold onto some for when it starts growing back months down the road. Chemotherapy often causes hair loss, otherwise known as Alopecia. This is because the cells in the hair follicles grow fast and chemotherapy damages fast growing cells.

(Saturday Oct 21, 06)

I felt a little nauseous all day. I slept 14 hours from midnight to 6:00pm. The side effect 'hand-and-foot syndrome' from Xeloda, the oral chemo, kicked into high gear today. It is very uncomfortable to walk. I could only last five minutes on my elliptical machine tonight. It was slightly more comfortable to wear shoes while walking around my home. Most of the joints on my fingers are very red and slightly sensitive. It's more difficult to remove twist-off lids.

(Sunday Oct 22, 06)

I am less tired and nauseous today. I did take a few long naps this afternoon though. It is very difficult (almost painful) to walk today so I called the clinic and spoke with the on-call doctor. He suggested that I reduce the amount of oral chemo from eight pills a day to six. He said this may still get worse over the next few days but that it should get better after I'm off the Xeloda (Wednesday November 25). I hope this doesn't interfere with my trip which will involve a lot of walking and hiking.

I lost three pounds this week, down to 146. I'm relieved that my appetite is still very good and that I haven't lost more weight than I have.

(Added: Thursday November 2, 2006)

(Wednesday Oct 25, 06)

It's the last day of oral chemo. My feet are not as bothersome. My hands are much more red but don't bother me very much.

(Thursday Oct 26, 06)

New effects of hand-foot-syndrome
My hands now slightly hurt when exposed to warm water. I received another expensive Neulasta shot to boost my white blood cell counts to make it safer for me to travel.

(Friday Oct 27, 06)

Shaved-head-syndrome
I shaved my head today. It took about one hour. I realized that I was fighting a losing battle. I got tired of all the little hairs around the house, on the keyboard, on the pillow, etc.

Bone pain
I felt great most of the day but in the late afternoon I started to get uncomfortable pain in my lower-back. Bone pain is a possible side-effect of the Neulasta shot. If I understand correctly, Neulasta helps create white blood cells and bone pain can be most prevalent in the larger bones of your body because there is more cell-building activity taking place there. I was getting occasional spasms of intense pain while trying to fall asleep. A couple Aleve tablets rescued me. I didn't want to take any pain-relieving medicine because I was afraid it might counteract the good things that the Neulasta shot was doing. I don't remember being told if I can take meds to relieve the bone pain.

(Saturday Oct 28, 06)

Time to think "fun in the sun"
I am five days out from my departure and cautiously optimistic that my trip may actually take place. I didn't think it would happen. I purchased a wet-suit for snorkeling at a scuba center. My feet and hands are much better. I can walk without discomfort and my hands are not as sensitive to heat.

(Sunday Oct 29, 06)

Winded – not windy
I find myself easily getting winded while doing simple tasks such as walking up steps. Every once in a while I would get "heart palpitations" while exercising or moving suddenly such as getting out of bed or a chair quickly. Sometimes it just seems to happen for no reason. A few times I also felt light-headed. My heart beats quickly for about ten seconds. I wonder what is going on with me now ---- what's next? I started exercising again now that my feet do not hurt. My hair is stating to grow back SLOWLY --- much earlier than after the chemo in the spring. I'm not sure if it will stay in or fall out after my next two rounds of chemo. Time will tell.

(Monday Oct 30, 06)

Numbers, numbers, important numbers
My feet are doing so much better. It doesn't hurt any longer when I walk and I'm probably about 95% back to normal. They seem to be getting better each day. My heart palpitations continue causing me concern. I was able to schedule an appointment for later in the day. My white blood cell counts are amazingly high. The Neulasta must have been kicking into high gear which explains my bone pain Friday. Normal counts are up to 11,000 (I forget what the units of measurement are). My count today was 50,000 so the Neulasta shot did the trick big time. So having these high counts makes me more comfortable going on the eleven day trip. My hemoglobin counts are low so they recommended a blood transfusion tomorrow. They said the transfusion might resolve the heart palpitations, light-headedness, and may also help me tolerate the high altitudes of Quito Ecuador.

(Tueday Oct 31, 06)

Receiving blood on Halloween
The transfusion of two units of blood was uneventful but a boring 4-1/2 hours. I'm not sure if "units" is the correct term. They were too bags of blood --- which by the way I told the nurse that I didn't want to see so they covered them with cloth. I napped through most of the procedure. It's weird for me to think that somebody else's blood is now in me. I do know that the source of the blood is from a volunteer, not a paid donor. So thank you whoever you are. I found out for the first time in my life what my blood type is ---- it's A Positive.

A note to my fellow passengers
I asked the tour coordinator for my Galapagos trip to forward this message to my fellow yacht passengers. It's self-explanatory.

My name is Mark Nelson. I am scheduled with you on our soon-to-be-amazing Galapagos trip. It will be apparent when you meet me that I have a medical condition. I would like you to know in advance that I was diagnosed with cancer of the esophagus in September 2005. This is an uncommon cancer and many people are not familiar with it. Unfortunately it is one of the deadliest and fastest growing cancers out there. I thought I was in remission when I booked my trip two months ago. Two weeks later I found out that the cancer has aggressively returned. I am 42 years old and have been given only months to live. I am currently going through chemo and have recently battled some side-effects that gave me concern whether I was going to be able to make this trip at all. It's a few days before we depart and I am feeling quite well and confident that I will be able to make the trip. I do not expect my condition to slow down our daily excursions.

Another reason I wanted you to know in advance is that I want (need) this trip to be nothing but fun and adventurous. I prefer not to discuss my health crisis while on my trip as sometimes I can get emotional talking about it. However, this is a cancer that more people need to be aware of. Immediately upon my diagnosis, I started a journal detailing everything that I was going through both physically and mentally. The journal also includes a little education about this disease. I didn't even know what an esophagus was when I was diagnosed so I had a lot to learn in a short time so that I knew what I was up against. After our amazing trip, I would be pleased to give you the link to my online journal or answer any questions you might have.

Subject change: I am traveling solo. I don't know how many other solo travelers there are in our group but I would be honored if you'd like to join me for our free day in Quito on Friday. I am interested in seeing the Colonial City and possibly the Teleferico (Quito Tram). I am more interested in seeing the true city with its history, landscape, and architecture. I have no interest in going to the Otavalo Indian Market. I don't know Spanish so I can't be of any assistance there. So if you'd like to join my, please e-mail, call, or leave me a message at our hotel in Quito. Otherwise, have a safe flight, a great day in Quito, and I'll see you Saturday morning!

I look forward to meeting everybody!!!

Mark Nelson

(Wednesday Nov 1, 06)

Head cut off
Tonight I found myself running around buying last minute items for the trip, including a snorkeling vest w/hood to wear under my wetsuit where the waters are cooler. The water temps will vary from island to island and which side of the island we are on. The last thing I want to do is go down there and be cold while snorkeling. With my weight loss, I chill easily. My hands have been drying out over the past few days as a result of the hand-foot-syndrome. I spent at least 1/2 hour removing dead skin from my hands tonight. Doesn't that paint a lovely picture? I finally started packing at 9:00 pm and I still want to update this journal before I leave to get everybody caught up. And I'm sure people are wondering if I'm making the trip.

(Thursday Nov 2, 06)

I'm crazy
It's now approaching 1:30 in the morning and I'm going to be in Quito later tonight. Finish up and get to bed Mark. I started the journal at 12:50, will likely wrap it up by 1:50. That's record time for me. Maybe I'm just rushing through it so I can hit the pillows.

Miscellaneous tidbits
• Recently I have gotten together with a few friends that I haven't seen for years. I can't help but wonder if I will ever see them again.
• I have had 94 cancer-related medical appointments – Yikes!
• I don't think I've experienced heart palpitations or light-headedness since the transfusion
• At least the political ads will be over by the time I return from the trip

I am so excited about my trip --- Bon Voyage!

(Added: Wednesday November 15, 2006)

(Sunday Nov 12, 06)

Wow!
Today I returned from an amazing experience in Ecuador and the Galapagos!!!
It truly was a trip-of-a-lifetime for me. The trip far exceeded my high expectations! And for such an involved trip where many things could have gone wrong, all of the pieces just fit...
• The tour company, Mountain Travel Sobek, was so organized and a pleasure to deal with. They know what they're doing and it showed.
• The weather was perfect in Quito Ecuador and Galapagos. The temps were always comfortable during our hikes on the islands. Never cool and never too warm. There was enough sun to warm us when needed which then gave way to a few amazing sunsets that fell into the equator's horizon.
• The snorkeling was amazing! The water was very clear and water temperatures were comfortable with the help of my new wetsuit. I snorkeled with sea turtles, rays, beautiful fish, reefs, playful sea lions, and two white-tip reef sharks (which was a complete thrill for me)
• The experience of being able to get so close to birds, animals, and marine life was unbelievable! I don't know if there is anywhere else in the world where one could interact with nature as you can in the Galapagos.
• The food in Quito and on the yacht was delicious and plentiful.
• The airline flights were smooth and departed on time. It took four flights to land on Galapagos.
• I had a beautiful hotel suite for three nights in Quito
• The yacht was terrific and perfect for this type of touring. The service on the yacht was top-notch. There were sixteen passengers, including me, with a crew of seven. My fellow-passengers were all wonderful people. We really bonded and enjoyed each other's company and getting to know each other. I walk away from the vacation with 15 new friends.
• Our naturalist guide, Greg Estes, was without question the best possible guide you could get in Galapagos. Greg is so knowledgeable on the fauna, birds, animals, the islands, and the island's history. All of the passengers felt so fortunate to have been matched up with Greg. He was so accommodating and took very good care of us.
• I gained one pound over the vacation. With all of the hiking, climbing, and snorkeling; the days were filled with a lot of physical activity. I was able to keep up with the pack, often at the front of the line.
• And most importantly of all, I felt so well during the entire trip. I was so pleased that my condition did not interfere with fellow passengers and that I didn't experience a medical emergency. It seemed like such a long time ago that I felt so well and didn't have any concern or discussion about my cancer for 11 days.

I plan to detail my trip outside of this journal. I will provide a new website link when it becomes available (hopefully within a week).

(Monday Nov 13, 06)

My room is moving up and down
I experienced sea legs this morning while working on my computer. Sea legs is a short-term illusion of movement on dry land after spending time in a boat or small ship. It felt like the room was moving up and down. I took a nap to let it wear off. It was odd to feel this two days after departing the boat.

Negotiation
My temporary oncologist recommended that my round three of chemo be the reduced level it was for round two. For the first treatment I had more I.V. followed by two weeks of oral chemo. As a reminder, the treatment was reduced for round two since my white blood cell counts go so dangerously low. I had an appointment today with a nurse practitioner before the chemo. We discussed my options. She suggested that we follow the oncologist's recommendation too. The hope is that when I get my next PET scan results in early December that the tumors will have reduced in size or at least not increased. If so, the combination of less I.V. chemo with one week of oral chemo, repeated in three week cycles, may be my "maintenance" treatment. Since I tolerated the second treatment well, it would be something that I should be able to handle without too much of an impact on my life and general health. At first I was reluctant with the reduced chemo plan. I want to fight this with all my might. It took me several minutes to agree to the plan. I realized that I cannot let my blood counts get too low and I did have some nasty side-effects from round one. I didn't want to repeat the four days of painful walking as a side-effect of the oral chemo. The oral chemo also caused most of the skin on my left palm, about 20% on my right palm, and some of the skin on my feet to peel. This peeling caused slight discomfort when the new skin was exposed to warm water or items such as warm plates and bowls. It also was very unpleasant in appearance for the week to ten days as I gradually peeled off bits of skin tissue. Hopefully the reduced chemo plan will reduce the chance of these unpleasant side-effects, or at least minimize the severity.

Round Three
I had I.V. chemo this afternoon. I got another slight case of dry heaves during the chemo. I looked at the overflowing trash can next to me and was concerned there wouldn't be room for my "output" in case my dry heaves turned into something with more substance. I paged the nurse to have the trash can emptied just in case. I was able to get past the moment without getting ill.

Looking forward to cruising
Originally I was scheduled to go on a family cruise at the end of February. I am concerned that I could get sick any day. A lot can happen to me in three months so I thought it would be best to reschedule the cruise for an earlier date. My sister Lisa rescheduled the cruise for the second week of January. I may be continuing with chemo treatments leading up to the cruise. Hopefully I feel as great as I did throughout my Galapagos vacation.

(Wednesday Nov 15, 06)

Fatigued
The chemo from Monday kicked in a bit today. I didn't feel nauseous but I just didn't feel that great. I was really tired during work. I took a two hour nap immediately upon returning home. I felt better after the nap.

Speaking of feeling fatigued, it's after midnight and I need to crawl into bed.

(Added: Tuesday November 28, 2006)

(Friday Nov 17, 06)

Ativan --- Good Friend, Bad Friend
Lately my body seems to heavily rely on Ativan to fall asleep. Tonight is the first night in many weeks in which I tried to fall asleep without Ativan. Today was a long and busy day, and I did not get to sneak in a nap, so I should have been very tired. After two hours of tossing and turning and with the little prospect of sleep in the immediate future, I compromised by taking 1/2 a pill rather than the usual full pill. One of the side-effects of the oral chemo is trouble falling to sleep. I will be asking my oncologist how I should wean off this very addictive prescription.

(Sunday Nov 19, 06)

Had better days
For some unknown reason today was not a great day. I was extremely tired, felt yucky, had diarrhea, and started feeling discomfort in my feet while walking. I hope it doesn't turn into the walking pain I experienced a few weeks back. I am so tired of the constant unpleasant taste in my mouth while taking the oral chemo. It's been like this for about one week. The taste of food and particularly drink is not as enjoyable. I cannot find any liquid that tastes good and normal. Not even water. This is yet another side-effect according to www.xeloda.com (the oral chemo). My palms are red and itchy. Honestly I am a little tired of always having something not feel quite right thus constantly reminding me of the bigger picture.

A bit lighter on the scales
I was surprised that I lost five pounds this week. I thought I looked a little thinner but....

A worrisome feeling
I am noticing a "different" feeling in my chest again. It's not painful but it concerns me. What is going on inside there?

(Monday Nov 20, 06)

Yippee!
This morning is the end of my one-week cycle of the oral chemo. Yippee! I have a two-week hiatus. I look forward to my taste buds bouncing back to normal.

Disappointment
I recently received a pamphlet from the cancer center at Park Nicollet Clinic. I almost overlooked a very short notice informing patients that they will be installing equipment to begin doing 'stereotactic radiation surgery' in December. It's a radiation therapy procedure that uses special equipment to position the patient and precisely deliver a large radiation dose to a tumor and not to normal tissue. This procedure does not use surgery. It is used to treat brain tumors and other brain disorders. It is also being studied in the treatment of other types of cancer, such as lung cancer. I had a difficult time finding good information about this procedure on the internet.

I left a voice message for my oncologist asking if I would be a candidate for this procedure. I received a call from the nurse informing me that this procedure is not suited for me because my cancer is too widespread. She continued to say that my oncologist and I will talk about this during my next oncology appointment on December 4. Even though I didn't get my hopes up too much, I was greatly disappointed that it couldn't be used to help attack the enemy. The major surgery, the radiation, and all of the chemo have done little for my battle. I feel so helpless at times. This news caused me to have several very brief emotional moments throughout the rest of the day.

(Sunday Nov 26, 06)

H.F.S. (and this isn't short for Happy Feet Syndrome)
My hands are starting to crack and peel like they did a few weeks ago at the start of Hand-Foot-Syndrome (HFS) I found a pamphlet that I picked up a few weeks ago (but never read) on HFS. It showed and described the three grades of severity. A few weeks back I experienced Grade 3, the most severe level which includes tissue breakdown (cracked and peeling skin) and severe pain while walking or using hands. I'm concerned that I will lose the layer of replacement skin that's only a few weeks old.

Putting the scale to the test (albeit a minor test)
I gained seven pounds this week. Makes up for losing five last week. I'm sure it's because I've been off chemo for nearly one week.

I notice my breathing is deeper at times. I often feel chest discomfort. It's difficult to explain. It doesn't feel congested but more like "something is there". My heart has been frequently beating quickly since Thursday, particularly when getting up from a sitting or laying position too quickly.

(Monday Nov 27, 06)

I don't want to know ---- not quite yet
I moved up my PET scan from Thursday to tomorrow. I booked a last-minute, long weekend to San Francisco with a good friend. I leave Wednesday and return very early Sunday morning. I'm looking forward to going back to one of my favorite cities. It's probably been twelve or more years since I was in the bay area.

I left a voice message for my oncologist asking her not to call me with PET scan results since I don't want it to (possibly) ruin my weekend in San Francisco.

(Tuesday Nov 28, 06)

Another expensive PET scan
I had an (uneventful) PET scan this morning. I am very concerned about getting the results on Monday though. The results of this test are far more important to me than previous results. In the past the results determined if I had cancer or not. And if I did, we would need to come up with a plan to attack it. With my last results I found out that the cancer has aggressively returned. As a result, my oncologist and I came up with a new chemo regimen that we hope will reduce the tumors, or at least slow down the progression. At the time I was given little hope that the cancer could be contained or reduced. I must hang onto hope that my body responds better to the two new chemos I have taken over the past few months.

This brings me back to the next results. If it shows the cancer is continuing to spread, I fear my hope for a miracle will be dashed. It's terrifying to know that my destiny will likely be set in six days!

But that is next week's concern
It's approaching one 'o'clock in the morning. I have to pack when I awake for a late morning flight. And I still haven't completely unpacked from Galapagos.

(Added: Monday December 4, 2006)

(Sunday Dec 3, 06)

Another great trip
I returned from another great trip very early this morning. My friend Bryan and I were in the bay area of California for 3-1/2 days. We spent two nights and days in San Francisco, an afternoon in Sonoma Valley where we visited a vineyard (of course), and most of a day along the beautiful coast into Carmel/Monterey. We saw many great sites, ate great food, and really enjoyed the sights and sounds that area has to offer. And again I was able to squeeze in another trip between chemo injections and side-effects while feeling great the entire time!

Meeting up with new, wonderful friends
I was so excited that I was able to connect with my new Galapagos friends Aarti and Lakshmi and their wonderful families during our trip! Aarti entertained us with a terrific Indian meal. So much food! I enjoyed it all and it was fun to try new, unfamiliar foods. And it just happened to be both Bryan's and Aarti's birthday that night so we enjoyed a very tasty cake while wishing them a happy birthday. I told Lakshmi and Aarti after dinner that I had the feeling that when we separated in the Houston airport after our Galapagos trip that I had the feeling that it was not going to be the last time that I saw them. And I was right. It made saying good-bye to them in Houston much easier!

After dinner we went to Lakshmi's house to spend the evening. The following morning Bryan and I did some sight-seeing in San Jose then joined up with Lakshmi, Aarti, their families and friends for a brunch at Lakshmi's house that she was having for her son's third birthday. She has very nice friends and again we enjoyed more new Indian foods before we continued on with our day in Carmel/Monterey.

Up with the tree
I had many things that I could have done today after napping away much of the day as a result of our red-eye flight but I put them all aside so that I could put up my Christmas tree. I didn't get a chance to do it last year since I was recovering from surgery. I missed not having a tree. It took me about four hours to accomplish the task. It's nice to see it again.

(Monday Dec 4, 06)

Finally, some good news!
This morning I received the best possible news from my PET scan. The tumors are not increasing. My oncologist said the disease is stable with some possible improvement. I was extremely surprised by the results since I was expecting, and prepared for, very bad news. I cried within seconds of her telling me. To expect such horrible news and to receive unexpected good news was very emotional.

A bit technical but here we go...
I asked my oncologist to explain to me, at a very high-level, the changes from this latest PET scan to the one in September when I received awful results. With the help of the internet to get some of the medical terms, I hope I'm describing this accurately...
The tumor appears stable in the nodule (a small solid collection of tissue with similar cells) in my upper-right mediastinum. The mediastinum is the part of the thoracic cavity between the lungs that contains the heart and aorta, esophagus, trachea, thymus, and lymph nodes of the central chest.

The spots where my esophagus goes into the stomach appears stable. They cannot tell if this is cancer or scars from the surgery.

They can no longer see the spot in my Pleural cavity (two membranes that surround the lungs). The pleural fluid lubricates the pleural surfaces and allows the layers of pleura to slide against each other easily during respiration. This fluid was cancerous when it was biopsied in September.

As Gomer Pyle would say: Surprise, surprise, surprise!
My oncologist and I were very surprised by the good test results. She said she had become use to expecting bad things when opening my file. To some people it may seem that my oncologist is negative toward my prognosis. I do not feel that way at all. The facts are the facts. Some people may also feel that I may have developed a "given-up" attitude too. I'm sure this is reflected in my recent journal writings. I look at it this way... I consistently play the lottery even though I know I probably won't win. I know the big payoff is unlikely but I play despite the odds. Regarding my cancer, I continue to fight the fight even though I know it will eventually win. Like the lottery, I can't change reality.

I told my oncologist about the concern I had with the "odd feeling" in my chest. She said there is no need to worry about it for now per the PET scan results.

Now what?
Since the combination of the intravenous and oral chemo seems to be doing the job, I will continue with this cycle until things change for the worse. I asked if I can even step it up a notch on the treatment but she didn't recommend it. They try to balance treatment with quality-of-life. The original dosage caused too many drastic side-effects for me.

I had I.V. chemo this morning and will begin one weeks worth of oral chemo tonight. My next I.V. treatment will be December 22, two weeks before I depart for my family Caribbean Cruise. If the pattern continues as it has over the past three chemo cycles, I should feel pretty good that week during the cruise.

It sucks that I will always be looking at two weeks of not feeling great much of the time (in addition to unpleasant side-effects) with only one week of feeling "relatively well" but it's what I have to do.

For the first time since last September, I now feel there's a chance that I will see my 43rd birthday in June.

(Added: Wednesday December 20, 2006)

(Monday Dec 11, 06)

The end of double-chemo week
This morning I took the last of the oral chemo pills for this round of chemo. I now call week one "double-chemo" week because I take the oral chemo and it's the first week after the I.V. injection. Double-chemo week is just plain unpleasant. I often feel fatigued and yucky (a term that I've probably used too many times, but it fits). I cannot wait for the metallic taste in my mouth to disappear. This taste seems to always be present while on the oral chemo. It's difficult to explain. Imagine licking brass. That's the best way I can describe it. I cannot wait for food and beverage to taste pleasant again. For the past few days food has also tasted salty.

(Friday Dec 15, 06)

Too much of a good thing
Tonight I ate way too much Chinese food leftovers from today's lunch. I was feeling great and had quite an appetite so I kept eating and eating. It started off as a large plate of food. I didn't think that I would eat it all... but I did. I regretted my actions soon afterward. It felt like my stomach was full and overflowing into my (remaining) esophagus. Perhaps it was. I lied down for 1-1/2 hours to allow my stomach to digest its contents and then I felt much better that evening.

(Sunday Dec 17, 06)

Putting a little more downward pressure on the scale
Tonight I weighed in at 155-1/2 pounds. I gained a whopping 6-1/2 pounds from last Sunday. This is the most I've weighed since being diagnosed. The trend lately for me is to lose about 5-6 pounds the first two weeks of treatment then gain it back the last week. I'm satisfied that I have been able to maintain an overall weight of around 150 pounds. Still light for my height but I cannot expect better when I keep forcing my body to deal with all this chemo.

(Monday Dec 18, 06)

Two very different tasks this morning
Every year I get a full-body mole examination from my dermatologist. I have many moles, particularly on my back, that have concerned me over recent years because having many moles increases the chance of developing skin cancer. Last year at this time I was more concerned about my esophageal cancer and the radiation burns on my chest. The dermatologist gave me an ointment which helped eliminate the radiation redness. I also had one suspicious-looking mole biopsied that ended up being of no concern. It seems each year I have at least one suspicious mole on my back.

Again this year I was more concerned about my current cancer than the risk of skin cancer so I did not request a full-body mole inspection. Besides I didn't think it would be a good idea to have a section of a mole cut out for a biopsy while on chemo (reduced blood cell counts). I believe that having open wounds increases the chance of getting an infection. So instead we discussed the unpleasant side-effect of the oral chemo, hand-and-foot syndrome. My hands started peeling again a few days ago. I am really tired of having cracked and peeling skin. She said the skin on my feet and palms is thicker than normal and that's why it cracks and ultimately peels. My dermatologist prescribed an ointment that may help with the peeling and tends to reduce the thickness of the skin. She recommended that I check with my oncologist before using the cream to make sure that it can be used while on chemo and anti-nausea meds.

As heard on many Monty Python episodes; "And now for something completely different"
After the dermatology appointment I visited a company that provides crematory services. I decided many moons ago that I would be cremated rather than have a ground burial. I didn't get warm and fuzzy over the appearance of their reception room. Although pleasant, the interior and furnishings were dated and in need of a renovation. I may still use the company for the actual cremation and look elsewhere for a reception room. I will be paying in advance the cost of the cremation which is $1,200.00. And for that price it includes a cardboard urn. Hopefully it's a thicker cardboard. I will likely "upgrade" to the most economical urn that costs a whole twelve bucks. It's an ugly-colored plastic urn but it's good enough for me and accomplishes what it needs to. I won't be requesting the top-of-the-line $3,500 urn. Seems like a horrific waste of money to me since I don't want the urn to be displayed (and who would want to display it anyways?). I'm not sure what I want done with my remains yet. I have a few ideas floating around.

Out with the bad thoughts
During this past double-chemo week, I seriously wondered if I would try a new chemo treatment upon my next bad PET scan results. Do I want to keep enduring side-effect after side-effect? It is so unpleasant to think that I will feel terrible eight out of 21 days. Then I start to feel a little better come day eight or nine. I can get back to scheduling outings with friends and family and start enjoying life again. The number of good days still out-numbers the bad and the good times far outweigh the bad times so I'll keep enduring. I have too many great friends, a loving family, things to do, and many lands yet unvisited. So out with the bad thoughts.

Far too near
My next round of chemo is Friday Dec 22. It will make for a rough Christmas weekend. Hopefully I will feel well enough to attend several scheduled Christmas plans with friends and family. However the timing is good that I should feel my best for my upcoming family Caribbean cruise that departs January 6th.

(Added: Monday January 1, 2007)

(Friday Dec 22, 07)

The start of double-chemo week
My nurse-practitioner cannot determine what is causing my continued chest pain either. She checked my breathing and it sounded fine so she is confident that fluid is not collecting in my chest.
Before injecting the chemo, the nurses must be able to withdraw blood from the needle. With her first attempt she was unable. I could feel the needle going deeper and deeper. Or maybe my mind was just imagining it since I still hate needle injections. I was starting to get queasy so I had the nurse come back in a few minutes before she stuck me a second time. The second attempt went well.
I received a shot in my stomach today to increase my red blood cell counts because my hemoglobin accounts were too low. I was told that I had this shot in April. Lately I have been getting the Neulasta shot to increase white blood cell counts (which I will also get in one week).

A new, unfamiliar user of my journal
While receiving chemo treatment, another nurse asked me if it would be OK to share my name and phone number with a patient of hers that found my journal while researching his oncologist. We share the same oncologist so he likely Googled her name which is listed several times in my journal. I called him immediately after my chemo. We spoke for a few minutes and I told him he could call me anytime, perhaps even meet sometime. He was diagnosed with cancer, not esophageal, this summer. He was coming in for his chemo treatment this afternoon. He said he found my journal helpful. This gave me the idea that my journal could have a little more information that could help those recently diagnosed. So at the end of this journal update I will post information and questions that I hope will be beneficial.

(Saturday Dec 23, 06)

Fortunately I did make two social engagements today. I didn't feel well but I didn't want to miss the lunch and dinner plans schedule with friends and families.

(Christmas Eve, 06)

Slept the day away
I missed out on one of my Christmas plans today. I was exhausted. I slept about 27 of the past 32 hours. The tightness in my chest makes it difficult for me to fall asleep. This chest feeling is really bothering me because it's becoming more frequent and painful. I went to Xeloda.com (the manufacturer of the oral chemo) and noticed that chest pain is a side-effect. At least now I know what is likely causing this pain. I think most of the side-effects of the oral chemo are impacting me.

I lost 6-1/2 pounds this week, the same amount I gained the prior week.

(Christmas Day, 06)

Not the social butterfly
I did make it to our annual family Christmas gathering even though I was not feeling well. I know I wasn't the most social person at the table but I'm glad that I went. I didn't want to miss another Christmas celebration.

(Tuesday Dec 26, 06)

Had to leave work early today
I had bad abdominal pains this afternoon about an hour or two after lunch. I left work early and slept it off with a three hour nap.

(Friday Dec 29, 06)

End of double-chemo week
This was my roughest chemo round to-date since I started it up in late September. I felt worse, the chest pains are more intense, MUCH. MUCH more exhausted, and eating has become much more unpleasant.

(Saturday Dec 30, 06)

Please don't pass the salt
This is the day after taking my last oral chemo pills. I usually start feeling a little bit better today, but not this time. Most foods and drinks taste like eating pure salt. It's no wonder why I lose weight during this first week.

(New Years Eve, 06)

Please don't pass the salt
For much of the day I experienced slight bone pain in the groin, upper leg area as a result of last Friday's Neulasta shot. Some food is finally starting to taste like it should. I stayed home tonight and quietly watched the ball drop us into the new year. I'm still in my non-drinking days of my chemo treatment and just didn't have the party in me. I don't drink alcohol for nearly two weeks of my three week chemo cycle.

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

---

Mark Nelson died peacefully on October 31, 2007 at the age of 43 after a two year battle with cancer. He is preceded in death by parents, Roger and Ardyce. He is survived by brother, Scott; sisters, Becky and Lisa (Kevin) Johnson; nephew, Logan Johnson; niece, Bailey Johnson; and many other friends and family. A celebration of life will be held at BUNNY'S BAR AND GRILL in St. Louis Park, on Monday, Nov., 5, 2007, from 2-6PM. Memorials preferred to N.C. Little Memorial Hospice, 7019 Lynmar Lane, Edina, 55435.

Published in the Pioneer Press on 11/4/2007.