Life is Good - My Cancer Adventure

Still Kicking!

2010-04-30T11:54:00.002-04:00

I'm still kicking! My first post in a very longtime. Here's a synopsis of the goings on over the past few months:

Major business first. My latest MRI, CT, PET chest x-ray scans were run this week. the results are .... drum roll .... UNREMARKABLE. Man I love that word more and more as time goes by! This brings it to somewhere around 1-1/2 years Beast free, depending on your start date!

So, literally, I am still kicking. I have taken up playing soccer more in earnest these days. Boy does it feel great to be back out on the field with less trepidation. I am also still coaching the Greatest 5th, 6th & 7th Grade Girls Team Ever. Lot's of fun with some "girls' drama" now mixed in!

I now have a new puppy, Tanner! He is now 5 months old, a mixture of Boxer & Lab (a Boxador) and is very smart, fun, happy, and healthy. I get the greatest greetings when I come in the house, whether I've been gone a few hours or a few minutes. You gotta love that unconditional love a dog gives you.

I have turned 50 years old, and happy to say so. Of course having stared at the alternative to growing older, I have to say that I much prefer celebrating this milestone. Anyhow, I still feel, oh, about 35. Some might say that my maturity level is significantly lower still. In fact my sister accused me of being a "just a big kid" earlier this week. We celebrated the B-day with a pretty fantastic B-day party with some very notable folks there. I only wish I had more room to invite more people, but unfortunately the place was space limited!

I am working full time. (Some have asked about this so I feel the need to answer to all.)

My kids are fantastic; Stephen ready to graduate HS; Emily is a fine young lady in HS; and Brenna growing up more and more is a "tweener" now. They are truly one of the bright spots in my life and continue to impress me more & more all the time.

Lori is still an important part of my life, and I am grateful to have her attention.

My friends, ex-caregivers, family, are still concerned with my well being, and I am still blessed by there care and love.

My eating repertoire continues to expand, but there are still the basic restrictions. Simple carbs and sugar can still do a number on me, however, I keep experimenting and the errors are not as bad as they used to be.

My weight is holding steady, however not as high as I want it to be. I have to admit some frustration here, but not to the point that I am too bothered.

I'm saddened that the Capitals have been knocked out of the playoffs by Montreal (so all is not going well). Hopefully, Montreal can do the same to Pittsburgh!

Overall, things are going quite well and thus the best way to put it is (of course) ...

LIFE IS GOOD!

Ups 'n Downs, and NIH Results

2009-12-23T12:43:00.003-05:00

So as not to keep everyone guessing until the end of a long rambling posting here, I thought I'd give the results early. Today's official NIH results to the CT scan, PET scan and MRI is (drum roll please) ... um ... er ... OK, OK here it is ... "Unremarkable." Everything is clear again. I have now spent the whole of 2009 without the Beast to be found in my body. A pretty remarkable year if you asked me.

Strolling down memory lane, it was about 11 months ago that I was diagnosed as having a recurrence of cancer. It was supposed to have metastasized to my liver (does anyone else remember that "happy" occasion?). Well with that diagnosis there were many ups & downs, mostly downs (candidate for "understatement of the year"). Fortunately the diagnosis was determined to be false and life has improved greatly since! One of the great fortunes of that misdiagnosis (and possibly the only fortune of it with the exception it being a mistake) is that I had the opportunity to get involved with NIH. To date I have not had a bad day at NIH. They were the ones that delivered me the good news that the Beast was not back as was thought at the time. They have also been the ones to continually to bring me the good news that my scan results are unremarkable. They continually bring me clean bills of health with great big smiles on their faces. What more can a guy ask for?!?! So thus we are at the end of a totally Beast-less year, the first of many I hope. I feel good, stronger and getting more so daily, happy, spirited and cured. Brenna asked me today when will it be official that I am actually considered cured. As she put it "a year is such a long time." However, in terms of being healthy, it seems as though illness was such a long time ago, and yet just a few weeks ago. I'll keep taking it 3 months at a time (per Toby's advise, taking one event at a time) which is when my next set of scans are to happen. So to answer Brenna's question, the bottom line is, one year down, four more to go until its official. In the mean time, watch me live.

Have a great holiday season and a happy & healthy new year to all.

LIFE IS GOOD!

Waiting Rooms at NIH

2009-12-16T08:41:00.006-05:00

Hello anyone still checking in. Sorry its been so long. It would seem that life has gotten quite busy, a bit more normal, and somewhat less adventurous (at least where cancer is concerned) for me. To say that life is not adventurous is truly a misstatement though. There is adventure in many things. Since my last posting back in September this year much has happened. I have coached the greatest 5th & 6th grade girls soccer team in the world (with the help of my son Stephen and another good friend Tony), I have played a couple of full 90-minute games of soccer myself, I have hiked Sugerloaf Mountain with Lori and Sam the Wonder Dog and the mountains of the Shenandoah with Lori, Diego (aka Trevor),Theresa and Sam too. Just this past weekend I hosted my now 12 year old daughter's overnight birthday party with 11 guests (9 of which stayed over night). I have traveled for work, but unfortunately not for pleasure. Basically, life is still adventurous but in a much more enjoyable and healthy way these days.

For those wanting to keep track, I have gained some weight back but seem to be stuck between 135 & 139 lbs. I can't seem to break the 140 mark, but that to will come. My new year's resolution is to start working out more diligently so that more muscle mass will form.

However through all these adventurous goings on, the Beast still has its little reminders that it was with me. For example eating (although much easier these days) can still be challenging on occasion. The biggest reminder though is my quarterly scans at NIH. I just had a set of scans this past Monday and will learn the results on 23 December. I anticipate a Merry Christmas from the doctors and a very happy "Unremarkable" answer yet again. Basically I feel good and I believe what my body is telling me!

To change gears here, I would like to tell you all a bit of the NIH experience. Along with the scans, the blood letting for labs, the IV needles to inject contrasts, filling out forms to disclose that I am not allergic to iodine and numerous other things, much of my time is spent waiting in waiting areas. I know, this is totally surprising to consider but alas, it is a realism that medical care requires a bit of waiting around and self entertainment (reading, crosswords, IPOD, etc). One of the ways to entertain ones self is to "people watch." At NIH there are a great many types of folks: doctors, nurses, interns, lab techs, administrators, parking attendants, janitors, construction workers, patients, patient family & friends, old, young, kids adults, mobile, debilitated, accomplished destitute, local, foreign, southern, northern, western, mid-western, Hispanic, Asian, black, white, all creeds, all races, all colors, and all ages (just to name a few). It really is a potpourri of life. It is also easy to realize that the Beast is very indiscriminate as to who it chooses to infect as its victim. I had the pleasure of meeting an elderly African American gentleman while waiting for my CT scan. I'd venture to guess his age at about 70. A very pleasant man who traveled to NIH from Florida for his testing and care. He had been doing so for 4 years already. We talked a while, compared the taste of various barium flavors and then he was called for his turn to get viewed from the inside. Then, I also saw a young boy, probably about 8 years old, hooked up to his chemo IV's walking with his mother, pushing his IV tree, then sitting and awaiting his scan. I marvelled at the dignity and courage his mothered carried about her while having to watch her son be poisoned to be cured of the Beast. But even more incredible, I watch this young boy show such strength and yet such innocence while carrying on his battle with the Beast. This boy was certainly winning the battle in his way. These kids (and inevitably I see a few every time I go to NIH for testing) are just incredible. They know so much, albeit about things I certainly wish they didn't. They are so experienced, again about things I wish they weren't. And they are so inspirational. They smile, they laugh, they bring that certain youthful enthusiasm into a situation that can use a lift in spirits. I will not say that the kids I see at NIH are jumping for joy, believe me they are not. However, many are smiling, joking with their family and care givers, and those that are not, have typically displayed courage beyond explanation. Although saddened by what these children have to go through, I am inspired by how they meet their challenge, accept their burden, and carry on their battle with the Beast. I find these kids very inspirational. I only wish they all could have their happy ending to their battle.

Well, as for me, I am doing well. I am naturally curious about the results of my scans, and am also trying to get ready for the holidays. I wish happy holidays to you all and (of course) good health in the coming new year. And always remember ... LIFE IS GOOD.

Where Were You Last Year

2009-09-24T19:56:00.004-04:00

Quick ... what you were doing one year ago today?

Most of us have a few days in our lives where we can vividly remember an important event. Many times these moments are associated with tragic moments in history, for example: the Space Shuttle disaster; JFK's assassination (if your old enough); John Lennon's assassination; Sept 11 ... need I say more. Then there are the happy events in our lives: your marriage; the birth of your child; graduation from college; etc. The common characteristic of all these memories are that you were likely conscience for them. Thus the capability of remembering!

Did you remember what you were doing one year ago today? Most of us can't!

Well, not to brag, but I do. It was exactly one year ago today that I had surgery. One year ago I had 1/2 of my esophagus removed, my stomach removed, and most importantly, the Beast tumor removed. One year ago today I became NED (that's No Evidence of Disease). One year ago I was unconscious for most of a day that will live in my memory for as long as I live. Because of one year ago, the rest of my life may turn out to be a very long time. It seems inappropriate to me that such an eventful day should not be a part of my conscience. However, considering the extent of work that was done on my body, man am I glad I was unconscious for it!

So after a year, I have to say that its been a tough year in many ways. I'm still trying to find my new normal and that is a little frustrating at times. However, on the flip side, at least I'm around to find out what that new normal will be. Because of one year ago (along with the chemo before and after, as well as the radiation after) I can say I've had a year...tough or not. So, even though it's been a tough one, I can honestly say its been a great year. I can still honestly say that Life Is Good.

I hope you've had a great year too.

Take that Beast

2009-09-16T20:23:00.003-04:00

No cancer again! The answer is "unremarkable" again. The Beast is still beaten back. All in all a pretty good day.

Life is Good

Adventure Reminiscence and Gratitude

2009-09-13T17:00:00.007-04:00

Its the eve of another visit to NIH. Tomorrow I will get a CT scan, a PET scan, and an MRI. Another chance to prove to all that the Beast is gone. Another chance to verify that I'm still a survivor. Another step in getting to my new normal. I'll be sure to post the results after I get them on Wednesday.

In thinking back on all the goings on in this adventure, I realized that September 24 will mark the one year anniversary of my surgery where my stomach, some of my lymph nodes, and more importantly, the cancerous tumor were removed. I've taken the occasion to reminisce by looking back at the blogs of the time. Because I was in the hospital at the time, Lori was kind enough to post updates for me so that all may stay abreast of the goings on. I dare say that her writing style is certainly much better than mine! So, as I reminisce I think that I should also give thanks for all the support Lori has given me throughout this adventure. Lori has been there with me from the time I felt a pain in my throat. She was there for me when I went in for tests which ultimately diagnosed the tumor. She was there for me for all that led up to treatment, through the chemo prior to surgery, through surgery, through the hospital stay, through surgery recovery, through post surgery chemo, radiation, and treatment recovery. She was there for me when I was misdiagnosed with a recurrence and then she was there when it was proven that the Beast wasn't back. The bottom line is that Lori has been there for me throughout this entire adventure when the easier route would have been to leave. I have expressed my gratitude to many in the course of my missives in this blog, but I never really gave a proper thanks to Lori for all she has done for me throughout. So with all the help, support, love, effort, time, writing, worrying, inquiries made, care, and driving done on my behalf, all I can do is offer up a simple phrase of thanks. Thanks Lori, you've been the greatest throughout and I've been very lucky to have you along on this adventure.

Deported

2009-08-08T17:01:00.003-04:00

Oh happy day, I am missing my spare part. The port is gone, or as Lori says, I've been de-ported. I think of this as a symbol of my completion of cancer treatment. This was the last vest age of treatments. I had the port in me for about 13 months. It was a constant reminder and a continued reason to go back to the chemo clinic for its monthly flush. Now, free of the leash to the chemo clinic, I feel another step has been taken on my road back to my new normalcy. Fantastic!

So the next step is another set of scans in September to continue to prove that the beast is gone. There may be more of these steps for years to come, but the accomplishments of the past 13 months are things to be remembered. Thanks to all for all the help and support along the way. I don't know where I'd be without you.

Life is Good!

Close But Not Yet

2009-08-06T20:44:00.002-04:00

Almost!

I had the Medi-Port removal all set for today, and then fate happened. Originally, my surgery was scheduled for 9:00 AM today, but the scheduler didn't allow for enough time for the procedure. Thus, I was rescheduled to 2:00 PM. Only that didn't work either. It seems that the surgery prior to mine was going to go into overtime, so I was re-scheduled again to 2:45. Well, as I was on the way to the appointment, I received another call from the nurse saying that the doctor would not be available until 3:30. So, I was re-scheduled yet again. Lastly, I got a call at 3:15 and guess what? Well I guess it just wasn't in the cards for today. So, bottom line, I'm scheduled for tomorrow at 3:15 and hopefully it will happen that I get to start the weekend with a little chest pain.

Keep your fingers crossed!

Bionic No More

2009-07-25T09:02:00.004-04:00

A little over a year ago I had the pleasure of having a "spare part" placed in my chest. This little device, known generically as a mediport, provided an entry location for chemotherapy to be injected into my veins. When it was placed in me I declared myself "the bionic man" in this very blog sight. The port was a great help in that it saved my veins form the onslaught of needles that were to follow and allowed Ethel (my favorite) to be a part of my life for a week at a time without monopolizing my arm. Unfortunately, it has also provided a reminder to me on a daily basis (every morning) that I have been a cancer victim and patient. While it remains in me I need to go back to the chemo clinic and have the port flushed out monthly so as to avoid infections from it. A monthly reminder of the clinic, the chemo experience, and another needle stick. The positive of the monthly clinic visits are the hugs and greetings I get from the nursing staff there, so I guess its not all bad!

As I am no longer a full fledged patient, but rather a recovering survivor (and it feels really good to say that!) I decided a while back that the "spare part" needs to be removed. I'll admit that losing the bionic man tag will be a blow to my ego, but its a blow that I'm willing to live with!

I e-mailed Dr. S (my chemo oncologists) to get the process started and to get a referral. Naturally nothing comes without debate in this cancer world. Dr. S wrote back that she recommended the port to stay in a year after radiation is completed in case of a (dare I say) recurrence. I responded that I would prefer to have it out and that it could be placed back in if a recurrence were to befall me (which according to Emily and my beliefs it won't...the Beast has been evicted). Dr. S has sent the referral.

So I am now scheduled to become a mere mortal with the removal of my bionic part on Aug 6. It will be an outpatient surgery and looks to be a great deal of fun. Finally, the last vestige of chemo days removed. No more daily reminders and monthly needle sticks. Yippee!

Have a good one all, and remember ... Life Is Good.

The Jig

2009-07-16T19:34:00.017-04:00

Mary Pettibone Poole is credited with saying (back in 1938), and I quote, " He who laughs, lasts." What a great saying!

So a few weeks ago I took a road trip with Dave-o to visit TJ & Joan in Chicago. We also were able to get together with another old college pal and roommate, Jorge. Joan had a bunch of things planned including a Cubbies game, a visit tho the Chicago Art Festival, a party at her sister's home (Kathy & Dave), and then a trip to the Chicago Blues festival. A perfect weekend! The only thing I had to promise to Joan was to perform my Cancer Free Jig. Naturally, I made the promise!

I think a little explanation is due here! The Cancer Free Jig, or CFJ as it is uncommonly known to most, is a jig that I witnessed on my 1st day of radiation treatment (oh so long ago). As I was about to go into my first of many zaps, a lady was coming out of the lab with a certificate in hand. As soon as she made it through the door, she broke out into a spontaneous dance and declared it her CFJ. I was quite taken with it. It made quite the impression on me and when I told Joan about it she said that I was going to have to perform one too. She also said that she was going to have to see it. So, I agreed. Thus, the CFG promise made for the Chi-town Road Trip.

The trip went almost as planned. TJ, Dave-o, & I went to the Cubbies game with a stop at the Sears Tower (how touristy of us). The tower was great, the Cubs game was a blast (Cubs lost though) and the three of us laughed a bunch!

The next day we went to the art festival with Joan's sister & bro-in-law (Kathy & Dave), Jorge came along, and a bunch of other folks too. It made for a wonderful afternoon. And we laughed a bunch!

This was followed by the party at Kathy & Dave's place (a tradition for the apres art fest times as I understand it). As the night went on, we laughed a bunch. The party was a blast, people were fantastically nice. And we laughed a bunch more!

During the party, I promised to dance my CFJ, as long as I didn't dance alone. So there were a few volunteers that joined in. Here are the pictures to prove it.

And we laughed more!!!

Unfortunately, sometime after the jig was completed, I ended up falling down the stairs at Kathy & Dave's place. No need for long explanations here, suffice it to say that good times were had by all and we laughed a bunch. Joan's other sister Carol helped to break my fall a little (thanks Carol), but the net result was a nasty soreness on my left side.

The next day it took me about 20 minutes to work my way out of bed, literally. So it was off to the Emergency Room with Joan, TJ & Dave-o where we ran into a doctor with a great sense of humor. Unfortunately, it really hurt to laugh. Thus, I believe that the doctor, TJ, & Dave-o took it as a personal challenge to keep me guffawing. And we laughed a bunch!

After a few x-rays (Joan accompanying me all the way as she always seems to do), confirmation came in as to why I hurt when I laughed. I was the proud owner of 2 broken ribs on my left side. OUCH!! (should you have the opportunity to experience this, do yourself a favor and pass it by) This curtailed the laughter a bit, but not completely! There were some good snickers that ensued that were at my expense, naturally.

Unfortunately, the broken ribs put a damper on our trip to the blues festival, but I was still able to spend some great times with the the gang, and Jorge caught up to us too. And we laughed a bunch (even if it hurt a bit).

Well, the trip was much needed even if the price was a soreness in my rib area that reminded me of my post surgical pain. However, the stories that have propagated from the weekend has provided a great deal of laughs. And in those immortal words of Mary Pettibone Poole, "He who laughs, lasts" I plan to keep dancing, laugh a bunch more, and last a long time! Watch me live!

Life is good!

PS: Sorry it's taken so long since the last posting. I hope all is well with you all.

Yesterday's Blur & Results

2009-06-20T14:29:00.003-04:00

Yesterday was a basic blur. When you get an endoscopy, they knock you out so that you don't choke on the camera ... the tube ... and any other ancillary equipment that may be going down your throat to get the pictures. That said, I was aware of my surroundings as I went into the Endo Room and got to see Dr. L, who was to perform the procedure. It turns out that Dr. L is the same person that performed the endoscopy last year that proved to be pivotal in finding that I had cancer. Dr. L said that she remembered me from last year too! She's a very nice lady who was definitely rooting for a different outcome this year! Although I have to wonder if she actually remembered me or if she was just playing along. I'll give her the benefit of the doubt though and say its nice to be remembered.

Anyway, I was knocked out and the next thing I know I was being awakened by a nice nurse who helped me to my brother-in-law's car. Chris (my b-in-law) had the pleasure of telling me that the endoscopy showed no visual signs of the beast being present. Dr. L took a couple of biopsies and we're still awaiting the results from the lab. Given the way things are going, I have to say that I'm pretty confident that they'll come back "unremarkable" ... negative ... no evidence of disease (NED) ... clean ... or whatever way you may want to describe cancer free.

So, given the visual results (I'm going out on a limb here), I get to say ...

WATCH ME LIVE and LIFE IS GOOD!

Happy Father's Day to all you dad's out there.

Cheers all!

Endoscopy Eve

2009-06-18T23:04:00.004-04:00

Tomorrow I'll get pictures taken of the my esophagus. I'll get to see the place where this crazy adventure began! Can't say I'm looking forward to it, but I'm glad I'm getting it done. Naturally I don't want a rerun of last year. Actually, I don't feel that there will be one. I'm rooting for some added closure here!

Fingers are crossed!

More "Unremarkable"

2009-06-10T23:51:00.003-04:00

Hi!

Yesterday I had the pleasure of visiting NIH again. I really have an affinity for the place. So, my day there consisted of more blood work followed by a PET scan. Then I went for a CT scan (administered by a very proud parent of a just graduated St. Johns College High senior ... SJC is my alma mater and my nephew also just graduated from there ... made for nice conversation and something in common). Then I went off to get another liver MRI. Tests, tests, and more tests ... or rather scans, scans, and more scans.

Today I had the pleasure of going back to NIH to speak with Dr. Sch, Dr. TR and Tricia RN. They first thing Dr. Sch said to me was (and I quote), "Congratulations!" There was further discussions of unremarkable scan results. Bottom line ... The Beast is still not hanging about. A pretty good day!

Thus, my affinity for NIH these days. It seems that every time I go there I'm either tested, scanned or given good news.

By the way, the efforts of Dr. TR, Dr. Sch, Tricia RN, the lab technicians, the PET scan machine, the CT scan machine, the MRI machine and for that matter, the entire NIH facility are your tax dollars at work. I am truly lucky that they are working with me and have a continued interest in me for their research efforts. Because you all have a bit of a financial input here from payment of taxes, I feel I should say ... Thanks for the help all.

Life is Good ... and unremarkable again!

Making Memories

2009-06-08T21:00:00.008-04:00

Dave left me a comment for my last posting that has inspired me to write about a thought that I've had for while.

After the SNAFU'd diagnosis, a good friend of mine (Mike) offered himself up as my own Make-A-Wish foundation. You see, Make-a-Wish-Mike works for COMCAST TV and can get tickets to many different events. So he took it upon himself to get my kids and me tickets to opening day for the Nats. We had third row seats right by the Phillies dugout on the 3rd base line along with tickets to a pregame party (food, drink, and fun with friends). Emily proclaimed that she liked hanging out with the rich folks. The game was a blast and the Nats actually managed to keep it close, almost pulling off the upset. We had a blast & a great day of memories!

Next Make-a-Wish-Mike went and got us tickets to game 5 of the Caps vs. Rangers hockey series. MaW-Mike gave us tickets that were right behind the goal, 10 rows back. Pretty cool! If you recall this was the game where the Caps were down 3 games to 1 in the series and they need to win the rest of the way to get to the 2nd round of the Stanley Cup. Well, the Caps won, the kids had a blast, and I had a wonderful time with my kids and another set of great memories. The only thing we lost that night were our voices from cheering too much! Mike came with his son and had a few good memories too!

Make-a-Wish-Mike then took it upon himself to get us tickets to a day of soccer. We were treated to a double header at RFK stadium with the Washington Freedom opening the day and DC United finishing it up. Unfortunately Stephen couldn't make the game so Emily had the joy of bringing a friend. MaW-Mike got us tickets that were on the field. Basically we were so close to the field that we could have reached out and touched the players as they performed a throw-in. Very cool! Better yet, as the game ended, we were escorted to the side of the field with the team benches and our escort arranged for the girls to meet the players of their choice. Autographs, hugs, pictures, for the girls and I got to shake a few hands. Pretty cool again!

Good times all! Good memories all! Thanks Make-a-Wish Mike. It's pretty cool to have more great memories and some darn good fun! Life is good! Take that beast, more good living!

PS: Don't tell Make-a-Wish-Mike that the SNAFU diagnosis was reversed. He might come to his senses and stop giving us some really cool tickets!

Resolve

2009-05-22T21:26:00.007-04:00

On the eve of Memorial Day Weekend I find that I am a bit melancholy and pensive in thoughts. I would guess this to be appropriate given the reason for the holiday. Being pensive is not a bad thing every now and then as it gives one a chance to get in touch with ones thoughts. So, here's a couple of things that have crossed my mind over the course of the last few days.

In the course of the recent "downs & ups" of my Adventure I have found that there are those that believe in you, those that write you off readily, and then there are the majority of folks that land somewhere in between. Likely the in-betweeners are the wisest of the groups. That way they are able to expect the outcome, whatever it may be and prepare for it as best as possible. I have to admit that my thoughts could have been described as in-between at times too. I found that I was unwavering in my will to fight the Beast to the end, but I also had to contemplate the end should it not turn out as I hoped it would. Think of it as looking at parallel paths to very different destinations. Its very disconcerting to think that way.

Recently I have found great strength in something my daughter Emily said to me. In fact it was just a couple of evenings ago. She flat out told me that the Beast is gone and that it is not coming back. Wow, I really love her resolve. She has this force of personality that really could will the Beast away. In fact, she is quite the force to be reckoned with all on her own. I am comforted that she has no doubts when avowing that the Beast is not coming back. There is no questioning in her voice, mannerisms, or resolve. Thus, she told me that those that are still scared of what the outcome might be, just need to be convinced that the Beast is gone, like she is. Then their fear will be gone too. Its all quite simple with Emily's resolve.

Understandably, there are others that may question Emily's conclusion a bit more. People with more life experience than my 16 year old daughter (can she really be that old) often times have more trouble simply believing. Some that have gone through this with me in an up-close-and personal way may find it difficult to simply accept. I'll admit that in the back of my mind (OK probably not all the way in the back of it) I too wonder if this is just a reprieve, or is the Beast really going to stay gone for good. I guess only time will tell for sure. However, I can not go forward in fear, otherwise I will not be able to enjoy my life. I need to go forward with Emily's resolve in my heart too. I need to really live, otherwise the Beast will have been able to exact a toll on me, my family, those that I love, my friends, and everyone that helped me through the tougher times. If I should waiver on this resolve, well, then there is some measure of defeat, and I can not accept that. I want things to get back to some form of normal again. Sure, there are some fairly obvious physical changes that will never get back to normal. After all, I will never be able to replace a lost stomach! However, I am gaining weight and I have goals in mind to help motivate my physical recovery. Now I need to add to that with more internal strength. More of Emily's resolve perhaps. Whatever it is, I know this, the strength (both internal and physical) will come! With this strength, my new normal will continue to evolve.

So, now that the "down & up" part of the Adventure seems to be on an "up" for the foreseeable future, I will start to use one of my lesser recited mantras (which I know I used when I was first diagnosed) a bit more: Watch me Live. And of course, the greatest revenge that I can take upon the Beast is to live well. Take that Beast!

The Word "Unremarkable"

2009-05-07T09:40:00.004-04:00

When one thinks of the word "unremarkable" what comes to mind? Go ahead come up with an answer, see what it is. I think of boring, not noteworthy, staid, steady, usual, unexciting. If someone were to describe you or your loved one as unremarkable, I bet it would be at least a little bit insulting to your sensibilities. It sure would be to mine! I don't think anyone wants to be known as unremarkable.

However, when dealing with the world of CT scans, PET scans, and MRI's while searching for evidence of cancer (the beast), the word "unremarkable" is the holy grail of words. All us of cancer types crave this word on the radiology reports when they provide the evaluation of our scan films. The "unremarkable" word can send us into tizzy feelings of giddiness, unending smiles, large sighs of relief, tears, and it can provide a new lease on life. I have been awaiting this word ever since Drs TR & Sch as well as Tricia RN at NIH told me they can not find the cancer beast that was thought to have returned. Unfortunately, the 3-phase-super-di-duper CT scan did not provide the "holy grail" word, but rather the more frustrating word "inconclusive." So, off we went to get an highly focused MRI of my liver as another attempt to get an answer. An answer which would be remarkable no matter what it might end up being. Yesterday afternoon I received the results of that MRI.

I was sitting at my desk at work when the phone call from Tricia RN came in. She said that my MRI came back unremarkable and then went into a bunch of details which I tried to focus on. I kind of got lost in what was being said so I had to ask her to clarify things. Then clarity showed through, the fog lifted, the confusion dissipated. Tricia RN said that the results of the liver MRI show no sign of cancer. I had a clean MRI. Not inconclusive not so-so, but rather unremarkable ... clean ... no cancer indicated! Tricia RN said that in her line of work they don't get to give out good news often enough, and this was indeed good news. Talk about understatements! She then faxed me a copy of the MRI report which states "the liver is unremarkable." Never have there been better words written as a descriptor of me!

I waited until this morning to provide the answer to the blog because I wanted to tell my kids, mom, sister (and her family), Lori, Joan, David, Pete, TJ, Janette, and some other folks first.

As a reminder that this is still an ongoing adventure, and to be extra cautious, NIH wants me to return in one month to repeat CT scans of the chest, abdomen and pelvic area; a PET scan of the torso; and another MRI of the liver. This is actually appealing to me (in a demented, twisted sort of way) in that I want to stay on top of "the beast" and continue to keep it at bay. That way I can claim overall victory some day.

For those that may be curious, NIH also reviewed the Kaiser CT scan and Washington Hospital Center PET scan again and believe that what was picked up was waste material in the bowel as opposed to a cancerous mass. Tricia indicated that this possibility was mentioned in the original reports from these scans.

So, I continue on this cancer adventure striving for unremarkable. I hope that my fellow cancer fighters that I have been talking to (Tom K, Mary, Sheri to name a few) will get to "unremarkable" and some others (Toby, Molly, Judith to name another few) will be able to stay at "unremarkable." Its a pretty great place to be!

Life is Good .... even if described as unremarkable sometimes.

Super-Di-Duper CT Results

2009-05-01T16:40:00.002-04:00

NIH has let me know that the results of the 3 Phase, High Resolution, "Super-Di-Duper" CT Scan are inconclusive. So they have schedule me for a High Resolution, "Super-Di-Duper" MRI of my liver on Tuesday to try and resolve any ambiguities. I have to admit that I'm sitting on pins & needles. At least it didn't come back positive!!! Stand by, there's more to come!

Bob Marley Is Right - Very Right!

2009-04-29T20:44:00.003-04:00

The immortal Bob Marley sang a song entitled "Three Little Birds" where he sings (and I quote) " Don't worry...about a thing ....... Cause every little thing ... Is gonna be alright." He repeats this line many times in the song. Well for the past couple of days, I have been singing this in the Mini (my recovery car) with the stereo blasting it out and the sunroof and windows opened for all to hear. In case you haven't figured it out yet, music is very important to me!

I have been visiting NIH the past few days (Friday 4/25, Tues 4/28, and today). They have been testing me in ways that I never thought I'd be tested. On Friday they ran a battery of tests which included: blood work (I do have blood in my veins); ultrasounds of my arms & legs (to prove that my veins & arteries are working without clots ... all is well there); ECHO & EKG (yep, I do have a heart despite popular belief); a chest x-ray (just in case the ECHO & EKG lied, but still confirms I have a heart); a brain MRI (got a brain) so to steal my son's line, I might still need to get some courage :-) ; and then a CT scan of my chest, abdomen, and pelvic region. Yesterday, I had a PET scan to confirm the cancer. Today I had a pulmonary test to prove that I can breath.

After all this testing, I met with Dr. TR (a fellow working at NIH on the clinical trials) and Dr Sch. (the lead of the clinical trials) of NIH. Here's the good part ...

The NIH doctors informed me that they can not find any evidence of disease. After all the scans, tests and reviews, they can not find the tumor on my liver.

They can not find the tumor which is the cause for all the concern. Bottom line here is that the NIH doctors are very confident that their findings are correct after reviewing my previous CT & PET scans and reports and then comparing them to the latest scans & reports. To use their words, I'm a great candidate for the clinical trial except that I do not have anything to run the trial against at this time.

My sister & I were both flabbergasted and were on the verge of disbelief. In an effort to convince us and to prove out the most recent results, I am scheduled for a "3-phase" CT scan on the liver tomorrow. This scan is a much higher resolution scan and more focused on the area of concern. Thus, if this high resolution, 3-phase, "super-di-duper" CT scan comes back negative, then the veil-of-question that I have will be lifted, and I will truly believe these results (although I pretty much believe at this point, I just don't want to move along without leaving every stone unturned).

What a day! Talk about a 180 degree turn! Can we use the term roller coaster here! A month ago I was recovering and a survivor; then all of a sudden I was Stage 4 and fighting for my life; now I may be back to recovering survivor. Wow!

Sorry if this roller coaster is tough on all, I'm just reporting things as I get them! However, with this tidbit of news I can only say that...

Life is Good and looks to be getting better again!

I Feel Good - The Great Irony

2009-04-22T20:59:00.004-04:00

Singing ( actuallyyelling) to the tune that James Brown made famous, I have to admit that "I FEEL GOOD, LIKE I KNEW THAT I WOULD NOW." This is the irony that I find myself in. I have been recovering from radiation/chemo for quite a while now. My stamina is still building, my appetite is getting better, food is enjoyable again, my repertoire of culinary delights continues to expand, and I find that I can eat things now that I haven't been able to in the past. Heck, I've even been able to stop taking Caumadin (thank goodness) so I don't feel (in true medical terms) yucky. Overall, I feel as physically good as I have in the past year or so.

So how can it be that I'm technically more sick than I've ever been in my life? I find this to be completely ironic. It would border on comical if it weren't so serious. I am truly amazed by all this!

OK, enough lamenting! Here's what's happening these days.

I have been in contact with both NIH and Johns Hopkins. Both organizations show a true interest in me as a possible clinical trial candidate. Quite honestly, if this were compared a sports free agency negotiation, I think that I might actually hold the best hand for negotiating with the teams vying for my particular inclusion in their trials. Essentially, the type of cancer that I present to them is fairly rare. Thus, the chance to use me as a data point in their studies probably has them figuratively salivating over my affliction. This poses another irony. I'm desired for the difficulty of curing my cancer, but I'm in this position because of the difficulty of curing my cancer. Ugh, can become too philosophical if I keep this up. So, I think I should stop this train of thought and get back to updating you all.

OK, both organizations show an interest. I have sent reams of info to NIH & JHU. These include CT & PET scan reports from the beginning to the most recent ones done. Also sent are: pathology reports; blood test results; info from my surgeries; pathology samples & slides from surgery and from my initial diagnosis; post operative reports; and more things than I can remember. I actually sent one organization a 27 page fax trying to answer all their requests and then received another request from them wanting more things that I had to get to them from the Washington Hospital Center. Indeed, this required WHC to get permission to release information to JHU and then another release form to send NIH information. I'm beginning to believe that the bureaucracy to get medical things done is worse than the government bureaucracy (and I work for the government). Please, Mr Obama, get medical electronics records passed through soon!

So, the bottom line is that I am making progress in getting accepted by a clinical trial and expect to hear back anytime from NIH. I already have an appointment with JHU with a couple of their doctors to take a look at me and discuss options.

I have also been generously offered by Molly & Don (friends in Houston) to make use of their home as a place to stay should I want to consider treatment at MD Anderson Cancer Center (where Molly was treated and cured). Mary (my friend with the the brain tumor who I've never actually met) has offered her mother's home to me as a place to stay should I want to get looked at by the Mayo Clinic where she is going to for her treatments. It still amazes me how people rise to the occasion to help in these crazy times. (More about this to come still in my next blog)

I believe that once I get all the info regarding my options, the most difficult part will making my decision as to which path to take. I have absolutely no idea how I will do this. I'll likely discuss it with my sister & brother-in-law; some of my close friends; my current doctors; and then pray for some insight. Then after all the input, analysis, and advise I'm pretty sure that the final decision will come from what I feel in my gut is the right way to go. Man, talk about the decision of a lifetime.

Well despite all that is happening, I can still relish in the fact that "I FEEL GOOD." Thanks for the yell, James Brown! It sure reminds me that Life is Good.

An Amazing Transformation

2009-04-09T21:15:00.003-04:00

Its amazing how things can change in a moment's notice. Back in January, I was one of the happiest people on earth having just completed my last radiation therapy. I was NED (No Evidence of Disease), I kept the doctors from putting a feeding tube in me, and I was on my way back to health. Over the last six weeks, I have been taking a cancer survivor's class at the Wellness Center with my chemo mentor, Toby and 23 other survivors. My taste buds have almost come back from the assault of chemo, and I've been able to learn how to eat again with more knowledge about foods I'm OK with coming daily. Most things were going well for me with some exceptions.

Given all the good things coming my way and my 1st set of scans being taken, I was sure that all would go like clock work. I guess you could say I was feeling pretty confident. So after the CT scan came back with some cause of concern, I felt a bit of concern, but not too much. Then when the PET scan continued the concerns, I felt a bit less confident. I had an appointment to see Dr. S (my chemo oncologist) to get an answer regarding the results.

The appointment is when the great transformation occurred. Dr S informed me that the CT & PET scans show that the cancer was indeed back. Not to mention that it had metastasized to my liver. Thus in one fatal swoop I went from a celebrating cancer survivor who was NED and on the road to recovery, to a Stage IV cancer victim with limited options. An amazing transformation!

I was told by Dr S yesterday & Dr. P (my oncology surgeon) today that they have exhausted all the tools that they have in their toolbox. Thus my options are these:

1. Clinical Trials: experimental treatments going on at places like NIH, Johns Hopkins, or other research centers.

2. Second Line of Chemo: The chemo treatment that I have received was considered the strongest thing that could be thrown at this cancer. Apparently, the cancer did not respond as hoped. Thus, a different set of chemos can be considered, however this set would not be as strong and therefore there is very little confidence that the results would be anything less than what would be desired.

3. Live & Let Live: Basically the statement here was enjoy the rest of my life without doing anything more to fight the disease. As many of you know, this really isn't my style. I'm just hate to lose too much!!!

So without further ado, we are investigating clinical trials with NIH & Johns Hopkins.

The fun is just beginning again. Looks like there is a lot more to go in this cancer adventure. Wish me luck and say a prayer. I can certainly use it!

PS: On a side note, I was able to take a bit of an escape from this craziness by spending much of the day with Lori and Sam (Lori's dog). It was a wonderful respite and much needed. Thanks Lori (and Sam)!

Doc, Your Kidding Me Right!?!?!

2009-04-04T11:56:00.005-04:00

The first thought that came to mind when Dr. S, my oncologist told me the results of the PET scan were, "your kidding me, right!" Well, she wasn't. Naturally I want to hear that all is well and keep going your merry way until the next set of tests. Then I'd want to hear that again , and again, and again. Well like Dave-o once said to me with a Cheshire cat grin when we were verbally bantering with one another, "How does it feel to want?"

The PET scan continues to cause the concerns that the CT scan started. According to Dr. S, there are a couple of marks on the frontal lobe of the liver that could be metabolically active (I think I got that right). Additionally, the PET scan brought up another concern in the mid-esophagus region. Dr. P (my oncology surgeon) once told me that this was one thing that he was worried about given that he observed skip lesions going up the esophagus during surgery. I am schedule to meet with Dr. S this coming Wednesday to talk about all this and to discuss the next step. We'll see what that brings! The cancer word was not yet used in our discussions. All she said was "concern." My sister & I will find out more on Weds!

If your wondering, I guess you could say that my main emotion here is anger. Having gone through the enjoyment of chemo, tacked on with the fun of radiation, and the shear excitement of surgery (not to mention the pain that followed that ... oops I guess I did mention it); I feel as though there shouldn't be a result of this kind with the notion of follow-on tests. I guess cancer (or that which causes "concern") just doesn't like to fight fair ... the Bastard!

Well, I guess I'll just have to be just as mean and underhanded in my response to it!

So, I have a few more days of suspense coming up and then a discussion of the way forward. My guess is that includes more tests. My prognostic bracket (March Madness reference here) has me in for an endoscopy and possibly some sort of biopsy for the liver "concerns." Only Dr. S knows what she has in mind at this point. We'll find out soon, then I'll let you all know.

Anyway, I'm not letting this stop my enjoyment of things going on around me. My kids start their soccer seasons today & tomorrow. I'm coaching the "greatest 4, 5 & 6th grade girls" soccer team today. I also get to coach my men's team tomorrow (I'm still too weakened to play). I am eating yet a greater variety of foods still. Tonight I get to be the live auctioneer at the gala at St. Catherine Laboure School (a fund raiser) which I've had the pleasure of doing for the past few years.

So life continues, and continues to improve. Basically.........LIFE is Good....still!

PET Tomorrow

2009-03-29T20:08:00.003-04:00

This is the eve of the PET scan. I'm a little nervous (not worried) about this since the results could have a profound effect on the next event (events) in my foreseeable future. I'll post the results as soon as I know them. Wish me luck or any of the other good wishes you can think of. Thanks!

My Check-up CT Scan

2009-03-19T23:05:00.003-04:00

I had my 1st check-up CT scan this past Monday. The results are a bit confounding. It would seem that there are a couple of "spots" on my liver. So, Dr S. (my chemo oncologist) has put me in for a PET scan (yippee). For those that may not remember, a PET scan is the one where you are injected with radioactive glucose, wait an hour, then go through another scanning machine. The theory is that the glucose will adhere to cancer and because it is radioactive, it shows up quite nicely on the film. I still need to schedule this, but I think I may be able to get that accomplished tomorrow.

With regards to the liver spots, I believe that my doctors are being cautious and that there truly is no need for alarm. I have to admit that it is toying with my mind a little bit, but another cancer survivor that I know went through something similar recently. It turns out that there was a bit of concern (particularly on her part) which fortunately turned out to be a bit overtly conservative CT scan reading and a blip in her blood markers. After further readings and another blood test, it turned that it was not a cancer recurrence. So, if she can do it, so can I!!!

So, keep your fingers crossed, say a prayer (if our so inclined) and wish me luck, but please don't worry. I'm not and won't be until there really is something to worry about!

Remember ... LIFE IS GOOD ... and too short to spend it worrying about every little blip!

Tips for Mary (and maybe others)

2009-03-11T22:16:00.003-04:00

So the other day I received an e-mail from Joan, my chemo angel. She had just found out that a law school friend of hers had a cancerous brain tumor. Her friends name is Mary. Well Mary had already been through surgery to remove 95% of the tumor, but the last 5% was going to require chemo & radiation. Joan was asking for advice or tips that she could pass on to Mary. I had just arrived back from a business trip to Newport, RI (literally), but I couldn't keep from responding on the spot. So here's what I sent:

Hi,

Just got back from RI. It was a good trip. The travel part was challenging though!

I'm sorry to hear about your classmate, my thoughts & prayers are with her.

First piece of advice, keep a good attitude and remember Toby's mantra, "Take one event at a time!"

Second: Get more medical opinions (if she hasn't gotten them already). More thoughts on what to do are always good either to confirm the way forward or maybe to check other options. Check into clinical trials, there may be added insight or even more alternatives to get to the cure and be a survivor.

Third: Be brutally honest with the doctors regarding symptoms and reactions to chemo and radiation. They can only work with info they get from her. Do not try to be overtly brave in getting through the treatments. There are ways to make things more comfortable. There is a web site started by Scott Hamilton (the skater) that lists chemo drugs, their attributes, expected side effects, and managing the side effects. Here's the link: http://www.chemocare.com/

Fourth: Good oral hygiene is a must through this. Chemo can do a number on your mouth. Sores on the tongue, inside of the mouth, and gums are not uncommon. This adds to the problem of eating through treatments. Use gentle or all natural toothpaste and mouthwash that does not contain alcohol. Alcohol will contribute to drying out the mouth, which leads to even more susceptibility to mouth sores. Get some Saline (0.9% Sodium Chloride Irrigation, USP) to rinse with. She may need to get a prescription for this from her doctor. It's basically salt water but it helped me out a great deal!

Fifth: Get as much help as she can. Get at least one "chemosabi" like you, Joan. The help is needed and will get her through many of her trials and tribulations.

Sixth: Consider counseling. A healthy mind and healthy emotions are really needed!

7th: Get plenty of sleep. It helps to escape feeling like garbage , and builds up energy.

8th: Eat whatever you can in quantities that are achievable. Serve up in small portions (this must seem familiar to you Joan!).

9th: Wash your hands a bunch of times throughout the day. Stay away from sick people. Wash fruits & veggies before eating or cooking.

10th: Talk to the nurses for advise when you want help with getting through or working around some of the symptoms of the treatments. They are a font of knowledge that need to be tapped.

11th: Use aloe vera lotion where they shoot her with radiation. This will help avoid or reduce dramatically the likelihood of skin burns where she's being zapped.

12th: Don't be afraid to talk with friends. It's amazing how much they want to help. If they offer, take them up on it and schedule their assistance. It will help them & her get through each event.

13th: If she gets a fever, 100.5 or higher, call the doctor immediately. This could be an indication of an infection which is yet another foe of chemo patients.

14th: Drink a lot of liquids. This will help her keep hydrated and will wash toxins out of her body faster.

15th: Remember that you have to be your own best advocate with the heath care providers. Ask questions and make sure you understand the answers. Do not let them blow you off with appointments that are too far off in the future. Make sure the chemo oncologist, the radiation oncologist, the oncology surgeon, and any other doctors your seeing are talking to each other. This may not be happening as readily as one would assume, so make sure it is/does happen.

16th: Smile a lot. Although cancer is a curse and hard, and terrible to deal with, there are many good things that can come from it. I know that it is hard to understand, but it is true.

17th: Remember that cancer sucks (not hard to do), but life is good. It may not seem like it right now, but it really is.

18th: Coming full circle to number one up top...attitude is everything.

I'm sure there will be more thoughts after I hit the send button, but this is all I can readily come up with right now. If your friend wants to talk to someone who has been down a cancer path, feel free to give her my number. I'd be happy to talk and listen to her.

I did have one more piece of advice that I remembered the next day. I was able to e-mail it directly to Mary this time. Here's what I sent (amidst a bunch of other things written):

By the way, one thing I did miss in my "tips" was the power of visualization. I spent a bunch of time during chemo sessions "seeing" my cancer weakening as the chemicals went in. I also saw parts of my tumor leaving my body whenever I was sick and throwing up (I usually cussed at the toilet on those few occasions).

If you read this far, you may have a friend that could use these too. Feel free to pass them on at will if you should deem fit.

Remember ... Life is Good!

2009-02-05T23:07:00.002-05:00

Hi anyone still reading! Sorry I haven't written for a while.

The first month of survival has gone by now. I have to admit that I seem to have a perpetual smile going right now. I have been back to the chemo room a couple of times over the past month to get my medical port flushed (an action to prevent it from causing an infection). Each time I walked in I had a feeling of trepidation, but the chemo nurses greeted me with open arms and even a couple of kisses. Not bad!

Yesterday I had an appointment with Dr. S my chemo oncologist. She is still pleased with me and my response to treatment. I'm to get a CT scan within the next few weeks to check to see if anything might be coming back. Keep your fingers crossed. Unfortunately, I am still on Caumadin, the blood thinner. I really dislike the way it makes me feel. If asked what it does to me, I couldn't express it concisely. I only know it makes me feel yucky (how's that for a technical term!).

I have yet to gain any significant weight. I'm told that this is to be expected as my body continues to heel from the radiation treatment. I surmise that it took quite a while to get into this skinny state, so it will take a while to get the weight back. I'll keep eating though!

I feel better everyday and although still easily fatigued, I feel strength and stamina coming back on a daily basis. I have been cleared by Dr. S to do exercises and weight training. As such I will be able to take advantage of a fantastically generous and thoughtful gift my friend Jon E gave me. He has bought me 10 visits with a physical trainer. Wow!

So, even while I claim the survivor nomenclature, the battle still continues and I still am fighting and am looking forward to continued improvements in my physical (and hopefully mental) state.

Life is still good!

A Little More Than a Week

2009-01-19T15:42:00.003-05:00

Its been a little more than a week since treatments are done. We are about to embark on a new presidential administration. The new year is still newly started, and I started to work again last week (albeit on a part time basis). This is truly a chance for new beginnings. I have a new challenge in front of me now, the challenge of transformation from patient to survivor. Some of the challenges include: gaining weight (I'm sure to evoke much sympathy with this one!); the challenge of getting back to some sort of normalcy; the emotional challenge of which I've heard so much about from other cancer survivors; and challenges that I don't even know about yet. I relish these challenges and look forward to meeting them head on. They are the mark of a survivor, something I'm quite proud of, and yet realize how fragile that statement is. I look forward to a course I've signed up for which is geared towards cancer survivors. I look forward to more time with my kids, something this disease has robbed from me. I look forward to getting back to physical activity as my strength comes back. I look forward to the future!

With all this looking forward to the future, I must recognize that I have some friends (near and dear, and those that I have never actually met but are still close, and some others that fall between these extremes) that are still going through their own fight with cancer. I look forward to supporting them in words and in deeds to help them get to the cancer survivor status. I wish them everything in the world to come through their cancer adventures successfully to make it to survivor status.

So after a little more than a week of survivor status, I have to say that things are going fairly well so far and that my spirits are high. As usual the bottom line is... Life is Good.

Take care all.

Treatments Are DONE!!!

2009-01-08T16:05:00.003-05:00

Finished with treatments!

No more chemo, no more radiation, no more assaults on my body, nor my psyche, nor my constitution. As if it were choreographed, even the weather seemed to be determined to make this a good day for me. The folks at the radiation center were very gracious and seemed very happy for me. Hugs were given all around with congratulatory sentiments given to me. I have to say that they were all great throughout my time there. The nurses, doctors, techs, and administrators were incredibly helpful and very kind. I could not have asked for better. These are very special people!

Anyway, here's another picture of the latest celebration of the completion of treatment. Joy & Mustaffa were my main radiation techs, and they were fantastic, and of course, there's the radiation machine behind us. Now its also behind me as another part of my cancer adventure. Pretty cool stuff. So now I'm a cancer survivor! Life is better than good!

Only One Left

2009-01-07T12:47:00.002-05:00

For those keeping count, I only have one more radiation treatment to go! Yippee!!!

The radiation techs told me that tomorrow is my graduation day. It is in so many ways. It is also a time for new beginnings. The greatest of which (and from what I here one of the more challenging ones) is the transition from cancer patient to cancer survivor (wow that sounds good!). There are a few more things that need to get done: more doctor appointments; removal of the access port in my chest; removal of the blood filter in my leg; and completion of Caumaden. But I look at those things as the "mop up" things that need to get done. Otherwise, I'll be done!

Life is good!!!!

The Stockdale Paradox

2009-01-04T16:25:00.003-05:00

For those keeping count, only 4 more radiation treatments. If the radiation machine does not go down, I'll be done on Thursday. Thanks for all the "chicken soup!" My motivation is back.

My buddy Dave-o came by the other day and said that he figured out the attitude I've shown during my cancer adventure. He declared it as the Stockdale Paradox. Here's how it is described:

Admiral James Stockdale was shot down in Viet Nam and imprisoned in the "Hanoi Hilton" for almost eight years. He was also its highest-ranking officer. How did he survive while others did not? "Retain faith that you will prevail in the end, regardless of the difficulties." He adds, however, what distinguishes his position from simple "optimism" - and formulates what has become known as the Stockdale Paradox: "and confront the most brutal facts of your current reality, whatever they might be."
This is the critical difference which guards against the endless disappointment that optimism’s carrots' evasiveness create - until, maybe, the reward in the end. On the other hand, an ability to continue making realistic assessments of one's current life situation measures and apportions one’s energies and reserves to better face each challenge as it comes, thus positioning one with a stronger chance to prevail.
- Fred Devett, Dec. 31, 2002

So basically, it is not optimism alone, but rather an attitude which assesses my situation while looking toward what my desired end result should be. Then setting out to accomplish the end result with a positive yet realistic attitude. Indeed I have tried to go through this adventure with integrity, courage and openness as well as a positive attitude. I have tried to use these traits as a way of taking and keeping control of a trying situation. I truly believe that these traits and a positive attitude have carried me through a great deal of what I have endured (with the help of a great many caring people). That and the advice Toby gave me of "Take one event at a time." So as the treatments are winding down in number, all I can say is that the "Stockdale Paradox" seems to have helped, and it is something I can carry through to many other parts of my life. It seems pretty cool to me that there is actually a formal name and explanation of the attitude I've tried to use/employ through this adventure. Hopefully, this might help others too!

Remember ... Life is Good!

Chicken Soup

2008-12-29T18:48:00.004-05:00

OK gang, for anyone that might be keeping track, only 7 radiation treatments to go.

For some reason I'm having trouble with motivation now that things are getting close to finishing. However, the prospect of being done soon is fantastic! I guess one could liken my motivational struggles to running a marathon. This adventure has been going on so long that it feels like one. Apparently, there comes a point in a marathon race where runners can hit a point where they "bonk." In layman's terms (or at least how I understand it), bonking is coming up against a point where your body & mind have a hard time to keep going. Lori told me the other day that often times the race organizers will have chicken soup at the 20 or 21 mile mark for those that are bonking. So, I'm working on my "chicken soup" now and trying to stay motivated. There is no question in my mind that I will finish this marathon in the fashion I want. However, it still feels as though the end will never get here. So instead of bonking, I'll keep on going after I get some "chicken soup."

"Chicken soup" comes in many forms. Most of it has come from those that have helped me through my chemo/recovery weeks, and Lori was a huge help to me today. However, some "chicken soup" comes from some of the most unexpected sources. For example, a little dose of chicken soup came from one of my radiation techs, aptly named Joy. Joy told me that she looked at my crazy blog writings over her holidays and left me a comment posting. I found the posting, and because of it, I have yet a little more strength for tomorrow's radiation treatment. Sometimes small doses of "chicken soup" helps a bunch! No "bonking" allowed!

Merry Christmas to All

2008-12-25T18:26:00.002-05:00

Merry Christmas all! What more can be said, other than my best wishes to one and all of you. ~ Steve

Chemo is DONE!

2008-12-20T18:18:00.002-05:00

As of Friday, Dec 19 I completed my final round of chemotherapy. This is the best Christmas present I can think of! Here's a picture of the final celebration at the oncology office. Cheers to all!

No Possibility of Bah Humbug Here

2008-12-16T20:50:00.002-05:00

This being the Christmas season, some of my neighborhood kids have decided that my house needs more holiday decorations. First my nephew Danny (with the help of TJ) put up a couple of Christmas blowup characters (a reindeer and a penguin) in the front yard, Later Danny and my niece Emma decorated the outside of the house with some Christmas lights on the bushes and trees. Very cool!

Tonight my neighbor Allison stopped by (accompanied by Emma) and brought with her a small artificial Christmas tree which she had already decorated with lights and ornaments and included a tree skirt to boot. She set it up in my living room where I have started to gather the presents that I have completed wrapping. Another very cool moment!

So, basically, with the help of these very cool kids, there will be no Ebenezers around here this year. Instead, there are just constant reminders of the Christmas spirit and that .... Life is Good!

The Last Scheduled Chemo

2008-12-15T17:52:00.010-05:00

Today marked the start of my last scheduled chemo regimen. I caveat it as the "last scheduled" as there have been fluctuations in the treatment plan throughout this adventure. That said though, I am excited about this and feel the proverbial "light at the end of the tunnel" is getting closer.

Thus, today I received cisplatnum and Ethel, with her 5 FU will be with me this week until I "kick her to the curb" on Friday. I want to thank Joan for taking me today. Here's hoping that things go well this week. This will be the first (and only) time that I get to go through chemo and radiation simultaneously. We'll see how this goes.

Speaking of radiation, here's a couple of pictures of the radiation experience. First here's the "A Team," my group of fantastic radiation technologists that treat me so well (I love these guys for their attitude & caring). Second, that's your friendly neighborhood cancer adventurer on the radiation table. The "cross hairs" on my side are magic marker used to align my body with the machine. There are little tattoo dots under the magic marker as a permanent marker for alignment. The machine is just above me! After radiating me from above, it rotates to my left side and then to to under the table to radiate me from behind. In total it takes about 10-15 minutes.

Anyway, here we go on the last chemo event. Yipee!!!

My Hair

2008-12-13T10:21:00.002-05:00

Some folks say my hair is coming back albeit a bit darker than it used to be. What do you think?

The Best Laid Plans...

2008-12-08T17:18:00.003-05:00

Today's surprise (drum roll please) ........ chemo is delayed by a week. Instead of starting today I will be starting it on Monday, Dec. 15. Another good & bad situation!

The reason for the delay is that my white blood cell count from my blood test this past Sunday was a lower than desired. It is still within the normal range, but at the low end of it. So, the delay is to allow my system to re-coop, and then get on with treatment.

Unfortunately, this puts my recovery week in the time frame of Christmas. In particular, I will be (hopefully) coming out of my chemo funk on Dec 23 or 24, and my family is getting together on Christmas Eve to celebrate. Keep your fingers crossed that things will be going well for me then (thanks!).

Bottom line, we'll get through it!

7 Done, 18 to Go - and 1 more to Go

2008-12-05T10:51:00.004-05:00

I've completed 7 of the 25 radiation treatments as of this week. A little over 25% completed. I wanted to have 8 under my belt, but the machine was down today. Thus, I have the joy of a day off, but the end date moves another day later. The good and the bad (hopefully there won't be an ugly!).

Next week I will have the joy of chemotherapy again. My "favorite" Ethel will be back with me again. This is the last time though. Again with the good and the bad. My guess is that the ugly should start somewhere around Weds of next week. We'll see! I'm curious how this will work with radiation therapy as far as my side effects go. I guess that curiosity will be quenched next week too! I'm fortunate that I will not have to witness this alone. Once again my Chemo-sabi Angels (Joan & TJ) are coming back from Chicago to stay with me and care for me. There are days when I think that I'm the luckiest person in the world. When these guys come from so far to help me, I know that I'm truly blessed. The gift of love and support are truly the greatest gifts of all.

The other show of support has been the calls, e-mails, cards and comments on this blog. I'm lucky enough to hear from folks near & far (as far as Iraq, Hungary, England, & Hawaii). I've also heard form folks as close as family, associates that I haven't seen in years, and every type of friend & acquaintance in between. It is very cool, uplifting, and touching. Thanks all!

So as events continue to happen and things progress, I'm happy to say that there is light at the end of this cancer adventure tunnel. I need to stay focused on the current events and the next one too, and not get too focused on that end-of-tunnel light. There is still much to get done treatment-wise and much to get through. However, with the help that I have received and continue to receive, I know that we'll get through it all in fine fashion.

Life is Good!

The Poem from TJ

2008-12-01T22:48:00.002-05:00

My friend TJ sent me a card the other day. The card has a poem on the front cover and it would seem that TJ decided that the poem was not quite complete. I'd like to share the entire verse, Hallmark's & TJ's. So, without further ado here it is (Hallmark's part first).

Sometimes bouncing back
is slow.
(Your not a rubber ball
you know!)
So plump your pillows.
Take long naps.
Have a spot of tea, perhaps,
With extra jelly
on your toast.
Wear the jammies
you like the most.
Hug yourself real good
and tight.
And just take care of you,
all right?

Fill the crevice on your
couch,
Try hard not to be a
grouch.
Feast on homemade soup,
And hope you can still p . . p!
As your hair has just come
back in,
Once again it is thin.
Watching all the NetFlix shows,
Without HD really blows.
Cover your head with a hood
and remember
Life is Good!

Thanksgiving

2008-11-28T16:49:00.012-05:00

On this Thanksgiving I find that I have much to be thankful for despite what the fates have thrown at me this year. Through all this adversity, there have been many wonderful revelations and experiences. So, I would like to take the time to acknowledge the ones that come to mind right off the bat.

First, I have to give thanks for my family, loved ones and friends. These are the people that have literally carried me through my toughest times. They have been there when I needed help at a doctor’s office with an extra set of ears. They have been there during chemo, and helped me through the its side effects. They have also been there through surgery and the joy of recovery from it. Now they are helping me through radiation. I love each and every one of you. Thanks!

I also must give thanks for my colleagues. These are the folks that have filled in for me at work and have made it possible for me to convalesce without worries. These folks have taken on added responsibilities without my asking, but rather at their insistence when I announced my cancer adventure. Thanks!

My fellow coaches deserve my gratitude! My son, Stephen and Steve Patterson made sure that the “Greatest 4th, 5th, & 6th Grade Gils Soccer Team” were able to continue in my absence without missing a beat. In fact, they had a better record without me there than with me attending and coaching. Way to go coaches. Thanks!

I want to express my thanks to my kids who have adjusted to these crazy times that have been forced on us. Fortunately they are thriving through this, which helps keep the number of my worries down. Thanks!

I must express gratitude to all my physicians. Their knowledge, dedication, and encouragement along with their honesty has helped me through this medical experience and I’m sure has saved my life. Thanks!

Lastly, I want to give thanks for all that I have learned & discovered this year. This year will probably go down as one of the most trying and toughest of my life. However it is also one of the greatest learning experiences of my life also. I have learned much about meeting challenges, about patience, about friendship, and adversity. I have learned that no person is an island, and many times we do not face challenges alone. I have learned that a well timed hug is worth its weight in gold. I have also learned of how many friends that I have, and it’s a great deal more than I thought. I have learned that with the right attitude you can overcome most limitations. I have learned that prayer, best wishes, and offers of help truly generate positive energy that one can feel. I have learned that I have helped others by sharing my cancer adventure openly. I have learned that there are many following along with my adventure, and that I love the comments to this blog. I have learned that I can get through a lot and still not loose hope, but rather keep my spirits high. I have learned that there are times I feel low and that others are there to pick me up. I have learned the fun of rediscovering simple things, like the joy of foods that I enjoy.

Through all this learning, the one thing that has been confirmed is the credo of this blog … Life is Good!

So for all this and so much more, I must give thanks and a big fat smile!

Happy Thanksgiving to all.

One Down, 24 To Go

2008-11-23T12:23:00.003-05:00

So I had my very first radiation treatment today. It is quite the experience. Essentially the whole thing feels like a production line. It is efficient in process, and they keep the patients coming and going as if you were getting a spray-on tan at a very popular tanning salon. The routine starts with checking in using a scanner. I was issued a card last week with my individualized bar code, which upon scanning puts my name in the cue for having arrived. I do have a daily time (9:50 in the morning) as my appointment. After checking in, I head over to the locker room where I change into a hospital gown (fortunately I get to keep my pants on so as to avoid mooning the masses). Then I get to sit in the locker room waiting area until summoned by the mysterious voice over the loudspeaker. Next up, the waiting area just outside the radiation room. At this facility there are 2 radiation rooms, and thus 2 teams of technicians. I am working with the Alpha team (or more commonly known as the A-Team, although I haven't seen Mr. T as of yet). When the patient before me is finished, I get to step in and get situated on the table. While I am lying on the table, the technicians move my body about to align it correctly so that the radiation beams will hit the target area correctly. My job is to lie perfectly still for the next 10 minutes or so. Pretty tough stuff but somebody has to do it! After alignment, the machine takes over. It hit me with radiation from my front side, then my back side, and the lastly from my left side. Upon finishing, I get up, head out and get changed back into the rest of my cloths and head on on my way. That's about it!

Well that's not everything completely. Here's a couple of observations from a first timer.

I had a bit of an ironic event as I was set to go in for my 1st ever radiation treatment. The lady who had just gotten her treatment before me was coming out of the radiation room all smiles. It seems she had just completed her last treatment and was dancing a jig. I'll be there soon, just 24 more of these to go (with one more chemo week in there too).

Just before I was to get my first dosage, the technician told me that I wouldn't feel a thing. Great news considering some of the things I have felt during this cancer adventure. Well she was almost right. Upon the radiation starting, I did feel a pretty different sort of sensation. It was like my entire body was next to a wool sweater in the dead of winter, and the static electricity cause my hair to stand on end. Very weird feeling indeed. So as I was walking out, the same tech asked how it went. I told her about the sensation and her response was to say that that was quite out of the ordinary. Well, at least I get to say that I'm special in my own way yet again.

So my road to health continues and radiation is now a part of my life experiences and will be for a while. I guess we'll get to see where this treatment takes me. Should be interesting!

More Fun with Food

2008-11-22T11:46:00.003-05:00

Ahh, the joy of trying foods that I have loved in the past!

I have been craving Sushi for months now. So last night, on the way to see what was later deemed the worst movie ever, Lori & I had the occasion to go to a Korean Barbecue restaurant that I have frequented before. We went with the idea of getting some beef ,and indeed we did have the marinated prime rib (which was very good). We have had some good Sushi there before, so we ordered a few yellow tail tuna sashimi pieces. It was to be another experiment in my world of food exploration. We decided to go with sashimi so that I could easily eat the fish meat without ingesting the carbo-filled rice, thus avoiding a rather unpleasant evening. We mixed soy sauce with wasabi for dipping and then marinated the yellow tail. Finally after months of craving, I was able to taste the much desired sashimi. Well, the culinary delight was fantastic! I loved each and every piece that I ate.

At the end of our feast the restaurant has a tradition of bringing an orange slice for each guest at the table as a means to cleanse their palette. Oranges are another favorite that I have avoided because I have not wanted to ingest too much citrus acid. However I love oranges too. So, throwing caution to the wind, I had a piece (wow, daring or what?!?!?). Well, all I can say is fantastic. It tasted great!

The entire meal simply brought joy to me, and I definitely will be doing this again.

So as I'm about to embark on radiation therapy, and my trepidation going in to another treatment that I have no experience with, I'm glad to say that some of the fun things are slowly coming back. What else is there to say but ... Life is Good!

Ethel has Left Me Again

2008-11-14T17:28:00.002-05:00

She's gone again!

One more chemo therapy week completed. So far it hasn't gone too badly although I feel a bit worn out right now. On the good side, I'm not in a fetal position and I am somewhat coherent (some may question of I can actually make that claim on a normal day). So now starts a recovery process, which hopefully won't take too long. So the second-to-last chemo session is done. Only one more to go!

On to radiation, which is now set to begin on Nov 24. The next event!

Today (Weds of Chemo Week)

2008-11-12T09:29:00.003-05:00

Its Wednesday of Chemo Week and so far things are going OK. As of this morning the side effects are minimal and I hoping this continues (knock on wood). In the past, Wednesday of Chemo Week was usually the pivotal day when I'd start to sink into the abyss. We'll see how this goes. Keep your fingers crossed.

Some more good news as of yesterday.

You may recall that when I was in the hospital, after the main surgery, a blood clot was discovered in the right side of my body. As a result, I have been on a blood thinner ever since called Lovenox. It is administered by a subcutaneous injection. Yep, also known as a shot, and I've said many times that I'm a shot wimp! Well to add to the joy of this, I had to administer these shots to myself twice a day (a real daily highlight). So here's the good news. I have successfully made the transition form Lovenox to Coumadin, a blood thinner taken orally. Yep, pills instead of shots! You talk about a reason for celebration. No more needles, no more wiping skin with alcohol swabs, no more pinching skin together for a target area, no more bruising and sores where the needle has gone in so many times, no more needle anxiety. Yippee!

Its these little victories that can feel so good at times. Life just keeps getting better!

Good Chemo News

2008-11-10T22:10:00.004-05:00

Today's chemo went well & so far this evening I'm doing well. Hopefully this will continue (yeah....sure)!

Today there was also some good news. Instead of three rounds of post surgical chemo, I will only have to endure two rounds. I guess they're cutting my sentence for good behavior. Yipee! Thus, I should be done with this chemo nastiness at about the same time as radiation will end. That will be mid-December, so I'll be recovered enough to enjoy Christmas. Pretty good huh?!?!?!

The world just keeps getting better!

Event(s) and Discovery

2008-11-09T09:26:00.005-05:00

Tomorrow starts the fun again! Chemo happens, Cisplatnum goes in, Ethel comes back, and my family & friends have signed up yet again to help me out. As Toby says, "Take it one event at a time!" So the next event is chemo.

The respite that I just had from fighting and feeling like kaka, thus allowing me to just focus on recovery was indeed great! I had time to enjoy the "Greatest 4th, 5th, & 6th Grade Girls Soccer Team" finishing out their season in the playoffs and their end of season soccer party; time to enjoy my son's and older daughter's soccer season finales; time to coach a couple of my men's soccer team games; time to get together with friends & family socially; and yes, believe it or not, time to enjoy going back to work; I even had a chance to enjoy the wonderful wedding of a couple of friends yesterday. Now this time is being interrupted by the reality of tomorrow's chemo start. But I've learned to cherish the good times and the times of normalcy during this respite. That indeed is pretty cool!

The other times that I've learned to enjoy more is the times of discovery. Lately, the times of discovery has a great deal to do with food. In the past week I've been able to try a few new things. Things tried were: beef, bacon wrapped scallops, mini crab cakes, Chilean sea bass (all of these at yesterday's wedding), barbecued chicken wings, baked beans (both of these at the work picnic), and Pepperage Farm's Verona cookies (a chance I took when comparing ingredients to other cookies I've been able to tolerate). I've grown to like cottage cheese, and peanut butter is starting to taste OK to me too. So the post surgical palette continues to expand. I hope that the cottage cheese will help carry me through chemo week & recovery week! I guess we'll see.

The other event to occur this week is "mapping." This is an event that has me going into the radiation office where I will be measured and locations for radiation targeting will be marked. I'm not sure, but I've been told that the marks are small tattoos. Basically dots are tattooed on you as markers for aiming the radiation beam. So it looks like I'll be joining the tattoo fad! I'll be just soooooo cool!

So this week looks to be a big week for me. It's the beginning of the final countdown of chemo treatments, the initiation of radiation treatments, and a time for more discovery. Oooops, sorry Toby, I guess that's looking at more than "one event at a time." Well, in light of that, let's just say that tomorrow starts chemo!

Remember, even when things seem mundane, appreciate it to its fullest, because ... Life is Good!

Friday with Dr. P2

2008-11-02T09:51:00.003-05:00

On Friday October 31 (Halloween), I had the fortune of meeting with Dr. P2 the radiation oncologist to have some further discussions and consultations regarding the way forward. Dr. P is a very straight forward person who is willing to discuss the pros & cons of radiation therapy openly. He also has an affinity with me as we both are single (divorced), fathers of 3 kids, and about the same age.

Dr. P2 talked about the few studies regarding people with my type of cancer and that there is no clear cut path to take in the road forward. He spoke about other more common cancers and how they can almost be binned into protocols that are appropriate. However, with stomach/esophageal cancer, things are a bit more grey. There are recent studies that say that there is more success with chemo prior to surgery and then following surgery with chemo & radiation. Some that say other combos of chemo/radiation prior to surgery followed by chemo post surgery is preferred. And many more combinations of chemo, radiation, surgery sequences that can bring confusion to the appropriate way forward. Dr P2 explained the side effects, the amount of radiation, the duration of the treatment, and many more things that come into play. Then he looked at me and mentioned that I need to make the decision as to how I want to go about tackling the post surgery treatment.

Drum roll please!

I have decided that I will go forward with both chemo & radiation. This is in keeping with my approach of trying to do everything I can to beat cancer, and beat it handily. I admit that going through this treatment combo is not something that I am looking forward to. It will be tough and I'll probably feel like kaka again, but I feel I need to do it. It is my responsibility to finish this fight and do everything I can to get better. This is for me, my family (my kids especially), the people that I love, and for all my friends and colleagues that are supporting me through this adventure. I am determined to win this fight!

OK, here's some of the details (I'll try not to be too confusing here). Chemo will consist of 2 drugs instead of 3 as was happening prior to surgery. The 2 drugs are cicplatnum and 5FU (yep Ethel is coming back!). There will be 3 rounds of chemo: one round prior to radiation; one round mid way through radiation; and one round after radiation. Radiation will be administered 5 times a week, once a day. The treatment will be 5 weeks in length. Thus the math says that I will get 25 doses of radiation. The treatment will be aimed primarily at my abdomen area where the tumor used to reside to get rid of residual cancer cells that may have attached themselves to other parts of me. I'm guessing that the belly area may glow in the dark when all is said & done.

So this adventure continues with the chemo/radiation starting up again in the next couple of weeks. As I've said to Lori, Joan, TJ, Dave-o, Pete, Christy, Chris , my mom, and many of my friends, "we'll get through it." Here we go again! Life is Good!

The Next Step - More Therapy (and not the emotional or mind type)

2008-10-28T16:27:00.008-04:00

Yesterday I had two appointments which my angel Joan accompanied me to. The first was with the thoracic surgeon (Dr. S) in the morning (which I wrote about in my previous posting), the second was with my chemotherapy oncologist (Dr. S2). After the good news from Dr. S that my status is NED (No Evidence of Disease), I was feeling pretty good about the world. Even though the weather had turned a bit dreary, things just looked a bit brighter. Joan & I were high-fiving each other all the way to the recovery car and all the way home.

So it was with optimism that I went in to see my chemo doctor (Dr. S2). When she joined Joan & me in the exam room she discussed the cancer, the removal, and aspects of the disease with us. She went on to say that my cancer was actually stomach cancer and not esophageal cancer. Then she went on to tell me that I would need another 3 rounds of chemo to fight off any cells that may have been left behind from the surgery. This was totally expected news! The new regimen will consist of cisplatnum and 5FU only. She has removed taxotere from the protocol so at least I won't have as many toxins injected into my body. Unfortunately, this regimen means that Ethel the wonder pump will be joining me again as the 5FU will again be administered to me over a 5 day period starting on Mondays. Sorry gang, looks like my not-so-nice girlfriend will be coming back to stay a few times again. Shall I say in my best "Poltergeist" movie voice, "She's baaaaack!" Bummer!

To add to the unpleasantness of facing chemo again, it would seem that Dr. S2 also prescribes radiation therapy, which is to coincide with chemo. Radiation will be given to me once a day, five days a week, for anywhere from 4 to 8 weeks. The duration is dependant on what the radiation oncologist (Dr. P2) prescribes. We'll find out more about this this Friday, as that is when I have an appointment with him.

When Dr. S2 announced that radiation is back on the table, you could have knocked Joan and me over by waving a feather at us. Up to this point, most of the feedback from my surgeons (Dr. P and Dr. S) indicated that chemo would happen and that radiation would be held off unless I really needed it. I'm not sure where this change of plan came from, but it really came as an undesired surprise. I'm reserving judgement as to whether I am upset or not about this added regimen until I meet with Dr. P2 on Friday. Until then, I will probably fret a bit, work up my courage a bit, and contemplate how to handle it when it happens. However, I refuse to get down about this until I get more information. Even if the news is tough, don't worry because I'll get through this too!

TJ & Joan have already offered to come back to help out during these times (man I love those guys!). So have many others around here (man I love you guys!). So I know that I can get through whatever these doctors can throw at me. After all, I still plan to beat this thing to a pulp and then spit it out and laugh at it when its completely gone. So even if it means battling non-NED cancer cells and beating them as opposed to a tumor, the victory will still be just as sweet!

Wish me luck! More is yet to come!

Call Me NED

2008-10-27T12:43:00.002-04:00

This morning I visited my thoracic surgeon, Dr. S. He's the fellow (along with my oncology surgeon, Dr. P) who cut open my chest and abdomen in order to remove my stomach and 1/2 of my esophagus. This was a post surgical follow-up visit, which seems to be a pretty standard follow-up for these things. His words to me are that I am recovering and progressing very well. He likened my surgery to being hit by a Mack truck and that the recovery should take quite a while. I still have soreness in my left rib cage area from under my arm to the middle of my chest. Naturally, the impatient side of me wants all this to be over with, but Dr. S assured me that this is to be expected and it could last for a few months. He also reiterated that I am coming along very fast. I guess that I need to take homage to his expert opinion despite my impatience!

Dr. S also declared me NED. NED stands for No Evidence of Disease. Basically, the tumor is removed and there are good margins, meaning there was no cancer messiness near where they cut off the esophagus and stomach. Great news! Only one of the lymph nodes that were removed was cancerous, and it was adjacent to the area of concern. As such, he has confidence that things are going well. However, he has adjusted his opinion a bit and seems to be in agreement with Dr. P that follow-up chemo is warranted. I'll find out more about that this afternoon as I am going to see my chemo oncologist this afternoon. I believe that there will be chemo in my very near future. The biggest questions are: "When will it start?"; "How many rounds?"; & "What will the intensity be?" Whatever the answers to these questions, I have very mixed feelings about chemo. I'm in support of getting it done to make sure cancer doesn't rear it's ugly head again. At the same time, I am not looking forward to the way chemo affects me. The yin & yang of the situation!

Well no matter how this goes, just remember to call me NED. NED is excellent!

Joan & TJ - Angels & Friends

2008-10-23T13:45:00.003-04:00

Joan has been with me since 2 days before I left the hospital. She is an unbelievable source of help and support. She has researched the net, talked with nutritionists, helped me in my "trial & error" efforts, made dietary suggestions, and put up with a sometimes uncooperative patient. She is scheduled to leave me this coming Monday, and I have to admit that I will miss her help and smiling face around here.

TJ ( the famous hat man, and Joan's husband) arrived here this past weekend and is staying through Sunday. He is a continual source of support and humor around here. The humor is always welcomed even if it does come at my expense at times. The adage of humor being the best medicine is an absolute truth in my mind. As such TJ has been of great medicinal value during his all too short visit.

I thanks goodness and God for these two folks. To have these friends is truly an honor and an inspiration for me to "pay it forward" after I get clear of this adventure. With friends like TJ & Joan, I can only say that ...

Life is Good!

Eating "Trial & Error"

2008-10-20T14:44:00.003-04:00

How many times have you used the term "trial & error?" In the case of trying to figure out a diet that I can work with, the nutritionists & medical professionals seem to like this term the best. The bottom line here is that there is not much information in the world on how to feed those of us without stomachs! I can understand this, as this truly is not a common affliction. So it seems that every day is a new adventure in menus, food types, and "trial & error." The unfortunate part is that when the error occurs, I usually end up on the couch lying down with a nasty (dare I say) "stomach" cramp.

We have learned that simple carbohydrates do not work for me. We are learning that there are some things that we expect to be OK for me and it turns out differently. We are also learning that patience is a virtue.

I am hoping that given time, my digestive system will become less sensitive and that my repertoire of foods will expand. In the mean time, "trial & error" will prevail!

Life witout a Stomach (so far!)

2008-10-13T10:51:00.006-04:00

I have been asked a bunch of really good questions about life without a stomach. One of the great questions is do I feel hunger. Well the answer is yes, but not exactly like I used to. There are some minor hunger twinges (not great enough to be called hunger pains). They don't occur too often and this is still fairly new, so I'm guessing that this may change over time. Essentially, they come on occasion when I am "hungry." Other times they come is when they are triggered by either smells emanating from or sights of various foods that might be around me.

I am eating solid foods again which also elicits the question of what I can eat. Instead of spelling everything out (and making more use of my poor typing skills), I thought I'd post the handout the hospital nutritionist gave me (see the previous blog posting). These are mostly guidelines to which I will need to experiment and figure things out along the way. The guidelines are not overly restrictive (thank goodness!), but there are some major casualties along the way. A couple of my biggest regrets are the loss of chocolate and ice cream for the immediate (and possibly the long term) future. This is killer! Oh well, sugar free frozen yogurts are still allowed!

Basically, I am allowed to eat most things, and the repertoire will increase as time goes on. I'm told that in the long run I should be able to enjoy almost any cuisine that I enjoyed prior to cancer. Great news! The basic casualties are: sugar (mainly sugary desserts), nuts (bummer as I love cashews & peanuts), fried foods (no more KFC!), and alcohol (although I'm told that I might be able to work my way up to an occasional glass of wine).

So as time goes by, and as I'm feeling more adventurous, my allowable food variety will get greater. Currently I am eating fruits (thanks goodness for this), chicken soup, pancakes, cereal with milk, cheeses (mild ones), crackers, chicken, turkey, cooked veggies, eggs, cottage cheese, and I'm even trying peanut butter (something that I'm trying to acquire a taste for).

Thus, given the fact that I can even eat solid foods at all (a miracle of modern medicine and body adaptations), I can honestly say that LIFE IS GOOD!

My New Eating Guidlines

2008-10-13T10:13:00.014-04:00

Here's some eating guidelines that the nutritionist at the hospital gave me. Basically, rules to eat by!

Ollie, My Second Roommate

2008-10-10T10:25:00.002-04:00

My first hospital roommate was a pleasant man named Mr. Cache (pronounced Cash). Mr. Cache was a quiet guy who very much enjoyed Spanish television. He particularly enjoyed a Spanish version of the Jerry Springer Show which must have aired 4 to 5 times a day. Needless to say, it drove me a little nuts, but I was able to tolerate it. So when Mr. Cache was discharged from the hospital, I was somewhat thankful for the peace & quiet with the lack of Spanish TV playing most of the day & night.

The peace & quiet was soon shattered with the addition of my new roommate Ollie. Ollie was a bed bound man who was in the hospital after neglecting a condition for years (as I understand it) which left his entire digestive system in peril. Essentially when he was moved in with me, his stomach & intestines were being held in place by a plastic cover over his belly area. He was a fairly slovenly fellow, uncooperative with the nursing staff, and boisterous. Bottom line, I had no peace & quiet for the rest of my stay.

There are many things that I could tell you about Ollie, many of which are somewhat outlandish. One thing I will say is that once he became my roommate, I felt as if I had received a foster child to raise. Ollie could not figure out how to summons a nurse using the call button. He instead preferred to bellow "NURSE" multiple times to deaf ears outside our closed door. When that didn't work, he would start calling "DOCTOR" as if moving up in the hospital pecking order would help answer his request. Alas, still no response! So, I would oblige by using my call button to get the desired response. I also decided to undertake educating Ollie on how to use the call button. This took a number of days to work out with him, but I had the time on my hands so in a sense, it gave me something to do.

It would seem that Ollie suffered a similar lack of understanding regarding the use of the hospital supplied telephone. More lessons ensued from me and many on the hospital staff. I think he finally gets it though.

Ollie was scheduled to go to another surgery on Tuesday, the day before I was to check out of the hospital. On Monday night he signed all the required papers and agreed to the surgery. Somehow, over night he had a change of heart, citing a dream he had, the need to do some legal work, and wanting to just go home as reasons for changing his decision. The bottom line, there wasn't going to be a surgery to repair Ollie's digestive system unless he agreed to it again. His doctor tried to convince him that if he left the hospital in his current condition, he would be dead before the end of the week. The social worker tried to convince him also while offering to help him with his legal needs. His family tried to convince him by trying to reason with him which basically ended up in a fairly loud argument. I tried to convince him by appealing to him with regards to surviving for the sake of his family. Ollie was firm on his answer.

While all the family arguing was going on, I had the luck of receiving 2 visitors (TC & Ski), friends & colleagues from the men's soccer team I play on. We decided to leave the room and get out of the melee that was going on. When we returned to the room, we found that everyone had vacated the premises, Ollie's bed was gone, and more importantly, Ollie was gone too. I later found out that he had finally agreed to surgery and was on his way to get it done. Thank goodness!

Ollie returned to the room later that day, with a new set of skin covering his belly area. He seemed a little bit more mellow (probably due to the anesthesia and drugs). He still was very demanding of the hospital staff, but at least he seemed to remember how to use the call button. By the following morning (the day of my check out) he was able to use the telephone again to call family & friends. Ollie credited me with helping him to change his mind and go ahead with surgery. I'm not sure I fully believe that, but at least I was successful in teaching him how to use the call button and telephone. I'm sure his next roommate will appreciate that!

I wish Ollie the best. I think he still has a long road to recovery from his ailments. He certainly has provided me another character and memory in this cancer adventure!

I'm Home - Yeah!

2008-10-08T13:40:00.003-04:00

In the immortal words of Dorothy, "There's no place like home." I was discharged today from the hospital! There were many hugs along the way from the crew of nurses that helped me (some even shed a tear or two). There was also the inevitable waiting for the the paper work to process, prescriptions to be gotten, the last of the blood lettings for lab work, and awaiting transportation to bring the wheelchair to get me to the car. Although these things seemed to take forever, I basically was out of there on time. There are a bunch of stories that I can tell from the hospital, some of which may end up on this blog site yet. After all, I have a few weeks to kill before I get to go back to work.

So, now I'm home! The house is a little cool (still waiting for the heater to do its thing), and there is a ton of mail to go through, but the first thing that was done upon my arrival was a bowl of corn flakes and milk (in true Hungarian fashion, eating comes first).

Thanks to all those that visited me in the hospital as well as those that mailed cards to me there. It was always great to look up and see who was coming around the curtain with a smile on their face. The cards were always a treat and when delivered, were definitely a highlight.

Also thank-you Emma & Danny for the wonderful welcome home signs and card. They were a terrific homecoming cheer.

A special thanks to Lori for keeping this story going. Having read Lori's writing style, I can't help but feel that we are taking a step backwards with how this story is told now that I'm the narrator again. However, I will try to keep the high standard of prose going as best I can!

The Cancer Adventure continues, but with a great appreciation of what it is to be home!

Life Is Good!!!

Homeward Bound

2008-10-07T20:59:00.002-04:00

Great news: Steve is being discharged and going home tomorrow--completely unencumbered by tubes, hoses, pumps, Frankenstein stables, morphine drips or the like. That is so exciting.

He will return home to the excellent care of Joan, who has once again traveled from Chicago to oversee Steve’s home recovery. He likely has another 3 weeks before returning to normal activities. I’m guessing he’ll need a little extra time before he is back on the soccer field playing. I do know, without a doubt, he’ll be at his "Greatest 4th, 5th & 6th Grade Girls Soccer Team” practice and games this week--no matter what instructions the doctors give him!

So, it’s time for me to relinquish control of this story and let Steve reclaim the blogging helm. With that said, thank you all for putting up with me in Steve’s absence. I should have made a disclaimer at the onset for all the medical errors I undoubtedly made recounting Steve’s hospital adventure. While I learned a lot about a total gastrectomy, PICCs, TPN, NG tubes, pain medications, etc., I’m still no expert, and suspect some of my entries reflected such. Lastly, thanks, Steve, for entrusting me to continue your tale (I know you doubted me!) while you were of unsound mind and body, but mainly just WiFi-challenged.

So, here’s to once again enjoying Steve’s presence on the soccer fields, in the work place and every where else we are accustomed to the warmth of his smile, the kindness in his heart, and his semi-dorky, engineer humor. :)

Cheers!

Food for Thought

2008-10-05T19:51:00.002-04:00

What's it like to begin eating again knowing your stomach is gone? So far it's going pretty well for Steve. After a day or two on clear liquids, Steve has already progressed to soft foods and even fairly solid foods. The first dinner of chicken and vegetables didn't go particularly well, but since then meal digestion seems to be going okay. He's eaten some tuna, crackers, eggs and french toast all of which have had no negative effects. In fact, the digestive tract seems to be waking up and doing what it needs to do. The list of foods he can eat pretty much outweighs what he can't eat so that seems positive. The main thing that he probably won't ever be able to digest is sugar. But who needs chocolate or ice cream any way? The question that still begs to be answered is: can you be hungry without a stomach? Maybe Steve can answer that in the months to come.

Besides the food progress, the highlight of the weekend has to be the removal of the chest tube. While it was painful coming out, it is a big step toward being ready to go home. It also makes it much easier for Steve to move around more comfortably. So now all the tubes coming out of his body are gone. That has to feel good!

I definitely think Steve is the most popular patient at WHC. Besides all the nurses taking a fancy to him, his room is usually full of visitors helping pass the time and keeping him engaged in lively conversation. Just mention Sarah Palin if you want to see him get lively! :) So if you are still thinking of checking out Steve's hospital scene, the best estimate for his discharge is Wednesday. And if you're thinking of visiting soon, he really wants some Q-tips!

He's Losing Things!

2008-10-02T20:58:00.004-04:00

Steve lost lots of stuff today, but gained much comfort and progress toward greater mobility. Let's see, no more: IV line in his right arm; needle in the mediport; catheter in the, well, you know; and best of all, no more Mr. Cash! For those of you that don't know Mr. Cash, he was Steve's roommate that felt the necessity to watch, with great volume, a Spanish version of a Jerry Springer-like tv program--24/7. Steve may have an entirely new vocabulary upon his release.

Steve also started on clear liquids including chicken broth, cranberry juice, hot tea and the ol' hospital favorite, red jello. Yum. Getting some real beverages through his the new system has got to feel like a great accomplishment.

Hopefully all will continue to go amazingly well, and maybe now we can count on one hand the days until he'll be home.

The Recovery Continues

2008-10-01T20:18:00.002-04:00

Steve's recovery continues to go quite well. Today his nasogastric tube was removed so no more band-aided plastic hanging from his nose. That will make him much more comfortable as well as more photogenic. Also removed was his epidural. That probably won't make him more comfortable since it was providing major pain relief, but at least it's one more tube out of his body. Thankfully he still has that thumb plunger he can push to administer morphine every 10 minutes. Hopefully that will be enough to keep him comfortable tonight.

The other big news is that the doctors took some X-rays to make sure the surgical connection of the intestine to the esophagus was not leaking--and it's not! In order to take the X-ray he had to swallow the ever-so-tasty jug of barium--probably not exactly what he had in mind for his first "meal." Speaking of which, he might be able to start on clear liquids as early as tomorrow.

Other accomplishments over the past 48 hours include a couple of long walks down the hall and continued improvements with his breathing exercises.

Steve sends a big thank you to all his visitors (there are too many to list), callers and texters (you know who you are). He's continually grateful for everything you've all done for him.

Post-surgery: Day 5

2008-09-29T20:01:00.003-04:00

Sounds like Steve had another good day in 2NW 23B. Not only did he sit up in the chair again, but he took a walk down the hall. That was his goal for the day, and he achieved it. While in the chair he got a bath, so now it's safe for all you would-be visitors to go see his dapper-self!

Post-surgery: Day 4

2008-09-28T20:02:00.004-04:00

Wow, Steve is one happy patient today! Chalk that up to a visit from his three children. He was so excited to have had a chance to hang with them for awhile. It's obvious they warmed his heart, served as better pain relief than the morphine, and left the biggest grin ever on his face. And to top it off, Brenna gave him the game ball from the "Greatest 4th, 5th & 6th Grade Girls Soccer Team's" victory yesterday! The ball was signed by each player and included inspirational (and funny!) greetings and well-wishes. The ball was given a prominant place along side him in bed, as shown in the picture. If you go visit him, I'm sure he'll show it off.

Another cool thing today was that Steve sat up in a chair this morning. He remained upright for some time until he thought he might doze off, fall out of the chair and cause unnecessary bodily damage. On the medical front, he got another new toy--a PICC line or peripherally inserted central catheter. The line was put into his arm to provide total parenteral nutrition or TPN. (So many new acronyms to learn.) Even though he's not hungry, it's about time he got some "food" since he hasn't eaten since Tuesday!

With the addition of the Redskins big win this afternoon, our favorite patient remains a happy guy. As he'd say...Life is Good.

The Ebner Clan

2008-09-28T09:47:00.002-04:00

This blog needs more pictures! Here's the good-looking clan the night before surgery.

Post-surgery: Day 3

2008-09-27T22:33:00.003-04:00

Steve is doing great! I just returned from visiting our hero and have only positive things to say. The extra little surgery last night doesn't seem to have had any negative effect. He looks good, his spirits are high, his pain is in control and he seemed content talking about his recent medical experiences, napping and watching college football.

Aside from some issues with the anesthesia department, he is quite happy with his care at WHC. His thumb is getting quite a bit of exercise pumping the morphine drip, and he is reluctantly doing his breathing exercises as well. As usual with Steve, complaints are at a minimum. He was however lamenting (ever so slightly) not eating enough sushi over the past few weeks. Who knows, maybe spicy tuna rolls are still in his future. I never rule anything out with him.

Despite a little trepidation, he is looking forward to taking a couple of steps tomorrow or as he calls it "walking." Given his past few days, taking a couple of steps is probably like finishing a marathon. Steve also requested that visitors hold off until Monday when he has regained a little more strength and feels he'll be ready to stay awake a bit longer.

All in all...way to go Steve!

Post-surgery: Day 2

2008-09-26T20:05:00.003-04:00

Well, this post-surgery phase of Steve's adventure seems to be having its ups and downs. I spoke to Dr. St. Andre, the head of the ICU and a good friend of mine (how fortunate is that?!), last evening and he said Steve was doing very well. He said they expected him out of the ICU by today and maybe even sitting up and taking a few steps. In fact, he did leave the ICU last evening and aside from being in some pain things looked like they were going well.

Fast forward to tonight...Steve called! He sounded groggy but pretty good. He said that aside from the pain things were going fine until this afternoon when he developed a blood clot in his lung. I know from watching House that's not a good thing. Steve said that he was heading back to surgery to have a filter put in his hip area to stop further clots from leaving his legs and traveling to other parts of his body. He still had his fighting spirit and was hoping to be out of the ICU quickly. We talked a little about life without a stomach and concluded restaurant spending would be way down! He is still positive, maintaining his sense of humor and determined to win each stage of his battle.

Dr. St. Andre called shortly after I spoke to Steve and gave me all the medical details of the filter surgery. The surgery itself should take an hour or two. He said that the clot in his lung should break up and not be a worry. That's about all the medical information I could absorb.

Keep your fingers crossed that this little extra surgery is quick and painless, and he's back out of the ICU quickly. I know he is anxiously awaiting a few visitors but wants to be out of the ICU first. Thanks for all the well wishes!

Post-surgery: Day 1

2008-09-25T15:10:00.003-04:00

After a rather uncomfortable night, Steve is doing much better today. This morning some adjustments were made in his pain management, and he is resting more peacefully this afternoon. Procedure-wise, the doctors will be making sure his new "connection" is not leaking. Once that is determined, and depending on bed availability, he may even move to a step-down unit as soon as this evening or tomorrow morning.

His Mother and Sister have kept him good company thus far. According to Christy, he isn't quite up for visitors yet, but once out of the ICU he probably will welcome them. We will keep you posted on that.

As you'd expect, the ICU staff love having him. Even in the tough times he has maintained his good nature and kind spirit (and I'm guessing sense of humor, too!) to those around him.

And since Steve never forgets to thank those that have helped him, a special thanks goes out to Dr. St. Andre at WHC for turning things around for him this morning.

The Surgery

2008-09-24T17:54:00.003-04:00

The surgery is over. Steve's sister Christy said it lasted about 9 hours. Steve is in recovery and will move to the ICU soon. The doctors performed a total gastrectomy. The good news is the doctors feel it was successful in removing all the cancer cells. He will remain in the ICU for a few days and then be moved to a unit where he will be able to have vistitors. I will keep you posted as I hear more information. I think we all know that Steve will get through this stage with the same positive energy and toughness he has displayed through out this adventure. Please keep posting your thoughts and prayers and I will make sure he gets them.

Other Tests & More

2008-09-22T22:28:00.002-04:00

In the hectic moments that are the last couple of days before surgery there have been a number of more mundane tests that have occurred. I went mid-week last week to get an EKG. This little test proved (despite what some may think) that I do indeed have a heart and that it works as it should.

I also had blood work done which proved that I do indeed have human grade blood, that it is red when oxygenated, and that there are all the right ingredients including things like red cells and white cells.

Today I went to get a Pulmonary Function Test (PFT). This proved that I do indeed breath air (despite what some may think).

So I am now medically ready to have surgery. The only thing left is the logistics for it. My sister, Christy will take me to the hospital (thanks Christy). Lori has volunteered to be my ghost blogger while I'm not able to do it myself (thanks Lori). Many others have offered to help in so many other ways that I could go on forever. To all those others I have to say ... Thank you so very much.

TJ & Joan have offered to come back from Chicago to help me out the week I get out of the hospital. The rest of the "Chemo-sabi Crew" are all volunteering to help too. What more could I ask for. Once again I have to say that I'm a blessed man!

To all those that have commented to this blog and sent e-mails in support of my adventure, I have to say that I love getting them. It gives me energy and strength. Thanks to you all for taking time to send your wishes, prayers, and support. Remember ....

Life is Very Good!

EUS Preliminary Result

2008-09-19T09:21:00.004-04:00

Today's test showed that the tumor has reduced in size. They also were not able to identify the 2 lymph nodes that were cancerous. Bottom line, the cancer responded to the chemo in a manner that we had wanted. Less bad stuff in my body! Take that cancer! You picked the wrong person to set up house in.

Life is good!

Endoscipic Ultra Sound (EUS)

2008-09-19T09:21:00.002-04:00

Toady's medical procedure is the EUS. This is a diagnostic tool to help with the staging of my cancer. I had this done when we were first getting the diagnosis of back in the June time frame. Basically I get put under sedation and then the real fun begins (I get to nap while others have to work). What they do is put a tube down my throat and take pictures of the tumor and the immediate area. Then the remove that tube and put a second one down which is slightly larger in size. The second tube has an Ultra Sound device on it which allows us to see through the wall of the esophagus and stomach to see how far the tumor has penetrated. It also allows us to look at the immediate area to see if the cancer has spread to it. This is how they discovered that I had a lymph node infected and another suspicious one too. They should also be able to tell me if the tumor has truly reduced in size.

I look to today's procedure as a pretty good one to give me certainty to the optimism I'm feeling about the tumor shrinking. I keep saying that the reduction in my symptoms has to be a result of less blockage of the esophagus and a smaller tumor. Basically I'm hoping that I get validation of that. Keep your fingers crossed and wish me luck!

Optimism reigns supreme!

Pre-Operation Stuff

2008-09-15T20:05:00.001-04:00

Preparations for surgery are underway. Today marked the start of "re-staging" the cancer. There are a couple of tests/diagnostics that will be done for this. Today's medical procedure was another PET scan. This procedure takes about 3 hours in total, but isn't too bad to do. Essentially, I was injected with radioactive glucose (don't worry, I won't glow in the dark). After waiting for an hour (I actually napped in a secluded little room with a wonderfully warm blanket covering me), I was placed on a movable table and run through the paces in a large tube. The tube is the PET scan machine! Essentially, the first scan takes about a 1/2 hour which covered my torso. They then scanned my head & neck. I think they might have done my legs too, but they didn't announce that one to me. Basically, for this test the radioactive glucose will "attach" to cancerous tumors/cells. This will light up for the PET scan to see. Unfortunately the scan can only see tumors as small as 1/2 cm. in size. Thus, it can miss smaller cancer hot spots that may be in existence. The good news is that nothing showed up anywhere in my body (with the exception of the esophagus & stomach as expected) the first time I had this scan. Naturally that was before chemo, so I'm fairly certain the results will be the same this time. Keep your fingers crossed!

So the next step in preparation will be a pre-operative exam, EKG, and blood work on Weds. Essentially, I'm going to get a physical! In the grand scheme of things, this should be pretty easy!

The Next Event in this Adventure

2008-09-09T22:34:00.000-04:00

So the next step in this adventure is surgery. I am scheduled to have surgery on September 24. It is then that my friendly tumor will be removed along with some of my esophagus and part of my stomach. A monumental day of ever there was one in my life!

There are a number of things that will occur prior to surgery. Essentially, these test will be ussed to re-stage my cancer. Based on the loss of many symptoms that I have felt, I have to believe that the tumor is smaller. I am very optimistic about the test and hope that they will confirm my beliefs. We'll see!

Anyway, the surgery is a pretty major one. Recovery will be challenging, but we'll get through it. Once recovered, I'll be tumor free. There will likely be more chemo after surgery in order to assure ourselves that there are no cancer gremlins left behind. I've been told that I will have the same chemo cocktail as the one I've been getting. However, there are hints that the intensity of the cocktail might be altered to something less. I hope so, that way I won't have to have Ethel with me quite as much. Keep your fingers crossed!

The Greatest 4th, 5th & 6th Grade Girls Soccer Team.

2008-09-04T13:37:00.001-04:00

I have a feeling that most of you know that one of my great loves is coaching. I have had the privilege of coaching Stephen, Emily, & Brenna from Kindergarten through 8th grade (Brenna through 5th grade where she is now) in soccer, basketball, softball, and baseball. Although I did my best in all of these endeavors I have to admit that I'm basically a soccer coach. I love the game whether playing it, coaching it, or watching it at any level it's played (pro, college, adult rec leagues, kids, ....).

Well, I am currently coaching one team which is the greatest 4th, 5th, & 6th grade girls soccer team (I am an admittedly biased source for this assessment). Their official name (as dubbed the the girls a few seasons back) is "The Extreme Team," and they live up to it in many ways. This group continues to exceed expectations, and challenges me to come up with ways to keep challenging them. This makes for great joy as a coach, and it's always cool when I see them do things on the field that we've been teaching them. The past couple of seasons we have played against older competition in order have competitive games. They continue to impress while playing at a very high level. The results are evident in that they continue to win they're divisions or they're conference. All right, enough bragging!

I truly love seeing these kids. They give me inspiration, energy, and frankly, a great big smile on my face. Their parents are also a fantastic crew of folks who have certainly stepped up to help out this season. They have adjusted to the coach (yours truly) not being quite as available for the team as usual. It almost seems as though the group has not missed a beat. I'm really happy about this because I really want these kids to have a good experience and to enjoy the "beautiful game."

I need to acknowledge a couple of others that have stepped up in their efforts to keep this team from missing a beat:

First would be my son Stephen.
An added benefit to coaching this team is my son joining me for the past 5 seasons as my assistant coach and "right hand" man. Stephen has had the occasion to take over the team as I was out of town for work or the like. He has proven to be quite the coach himself. This season he has been instrumental in keeping the coaching consistent, the practices organized, and the girls trained. For this I'm thankful and proud.

Second would be the Fantoms (Joe & Susan) who have taken over the administrative duties for the team. This is my least favorite part of running a team! They have taken on the least appreciated part of the work and are doing a great job!

Third, Steve Patterson.
Steve is a friend of mine who has coached many teams in the past for his own kids. He does not have a kid on the Extreme Team, but asked if he could help out. I quickly said yes, knowing that he would work well with Stephen (my son) and is great with kids. The fact that someone as busy as he is, and still willing to volunteer like this says volumes about how people want to help and are willing to step up.

Because of my love of the game, coaching, and the fun of being with the kids, coaching has been very rewarding. However, I don't think I ever realized how much the coaching experience has brought to me. Until I saw how many are willing to help this group of kids continue to thrive, especially when this slightly ailing coach can't be there for them, and how excited the kids are to back on the field, I can now see how much it does mean to me. Very much!

Life Is Really Good!

Recovery Week 3 (RW3) - so far

2008-09-04T13:10:00.000-04:00

RW3 has gone fairly well, albeit a bit strange. It has been optimistic in that my level of health has been higher than the earlier RW's. On the flip side, there has been some "ebb & flow" as to the level of health. This "ebb & flow" just doesn't want to let up as of yet. Don't get me wrong, I'm pleased that my level of discomfort has been significantly less than that of any other of the RW's. However, I was hoping that I'd be done by now! Well, this just proves that you can never count on things to go your own way during this adventure no matter how much you will it to be so.

So RW3 has found me with the cadre of people continuing to help. What more can I say, the words lucky, blessed, humbled, gratified, and appreciative best describe my feelings. I don't know how I would have been able to get through this without these folks. Thanks To You All!

I have been battling with a fever this past couple of days (one of the great chemo patient nemeses). It spiked a little yesterday, but with the help of my friend & nurse extraordinaire Veronica, we were able to keep it in control. Actually, this made it possible for me to make an appearance at soccer practice for the Greatest 4th, 5th & 6th Grade Girls Soccer Team for about 15 minutes. Hopefully it won't come back, but we'll see what the rest of today brings.

So, today finds me a bit cautious about activities and trying to keep the mouth sores at bay. Considering how hot it is outside, staying indoors doesn't seem so bad!

Chemo Week 3 (CW3) - in review

2008-09-02T06:45:00.000-04:00

I apologize in that I'm a little behind in getting this posting done.

CW3 is done! Ethel is in her home at Kaiser probably getting ready to go home with someone else. I tell you, she has no loyalties. However, given the last set of comments sent by many of you, it would seem that there are very low opinions of Ethel. Things written about her such as: "seems to be very controlling;" "too clingy, always needing to be by your side;" "loud and annoying" to describe her. I was even told to "kick Ethel to the curb the first chance you get!" Well, in truth, you all are correct, and I have indeed "kicked her to the curb" for now. The love hate relationship is over for the moment as surgery is the next major event in this adventure.

The way into CW3 went much better given the weight gain and the other improvements to my symptoms. I was stronger and more ready then ever. Joan arrived on Sunday, and off we went to chemo on Monday morn. Things went without a hitch. Tuesday morning I weighed myself and found that I had actually gained a couple of more pounds than I had on Sunday morning (exciting stuff I know, but I surely was!). Unfortunately, Tuesday morning found Joan needing to head home to Chicago to attend to her son who had been admitted to the hospital for a mysterious disease. (It was later diagnosed as salmonella, to which he is back at school today. All is well again). So with my chemo angel leaving, Dave-o & Pete swung into gear and made sure that I was supported throughout this round and during Recovery Week 3 (RW3). There is a chart with names all over it filling in every time slot, 24-hrs a day, 7 days a week. Unbelievable and reassuring. This cadre of caretakers (love the alliteration?) have been supportive, patient, and downright fantastic. I can't begin to express my gratitude enough for all they have done.

The result of the added strength going in and the care that I have received has netted CW3 as the smoothest and least difficult of the 3 chemo rounds. I have not gone nearly down into an abyss as I had in the previous rounds, only finding myself in the fetal position occasionally. I did have a couple of minor cussing sessions with the toilet, but these even seemed to be less intense. Overall, this has gone well (obviously in relative terms!).

I am starting to climb out of the effects of chemo already. Given that this is usually a time that I'm still in fetal position, I have to say the outlook for the rest of RW3 is good (I'm knocking on wood as I write this). I'm looking forward to the possibility of food being enticing again (not there yet). I still have an issue with my white blood cell count being low from this round, however, at this point in time, it's still higher than the last couple of rounds at the same stage. Optimism reigns supreme!

So, all in all, Life is Good, even this week.

Many thanks to the cadre: Dave-o, Pete, Thom, Katherine, Lori, Emilliano, and Veronica (aka Verne, Vernie). Also my many thanks to the spouses of these folks who have them away for the time they are with me.

Francesca's Poem

2008-08-31T15:59:00.000-04:00

This poem was sent to me by my 12 year old niece. She is a vivacious, smart, inquisitive, and beautiful young lady who seems to be happy almost all the time. Francesca stayed by my side during Chemo Week 1 and helped nurse me to health. I am truly touched and blessed by her and her family (my sister et. al.). They are a true source of strength. I originally posted this as a comment to one of the blogs, but I think it warrants its own posting.

Uncle-
You are always in our prayers.
my uncle is strong and
my uncle has courage
my uncle was sometimes weak
my uncle gets stronger every week
my uncle loves people so much
my uncle is gentle to the touch
I Love My Uncle!!!!

HUGS AND KISSES
- Francesca A. Music

Chemo - Round 3 Starts

2008-08-25T18:14:00.001-04:00

Today starts round 3 of chemo. Whoopee! Ethel the Wonder Pump is back from today through Friday again. Whoopee! I have to remind myself that Ethel is there to help and work towards my cure (a needed change of attitude towards her on my part).

Joan is back from Chicago to be my caregiver this and next week. I'm so grateful to her and TJ for this. I'm sure it is a sacrifice on their part that they will never admit too.

A little good news to share. I have managed to gain 9-1/2 lbs of weight this week. My goal was 10 lbs. so Lori told me that I need to round to the nearest whole number, thus 10 lbs. it is! Whoopee! The chemo squad was also happy hear this news. Dr. So (my chemo doc) got a big smile on her face when she saw the numbers from my weigh in.

So, do you know anyone else that would be happy about gaining 10 lbs in a week? Think hard! I love being a little different!

Life is Good!

Toby's Visit

2008-08-20T22:24:00.001-04:00

The other evening I had a wonderful visit from Toby. Toby is both a friend and a co-worker who happens to live near by. Words to describe Toby are: energetic, intelligent, mentor, enthusiasm, caring, funny, giving, open, adventurous, and many more. She is one very cool person.

Another word for Toby is survivor. She has survived her own bout with cancer and has been very open about it with others, including me. I look at Toby as a "sort-of" mentor in getting me through chemo. When I first spoke with her about my diagnosis, she offered up the greatest piece of advice which I have definitely taken to heart. Her advice was "take it one thing at a time." She followed it with words to the effect of not trying to look at the entire challenge and all the steps, appointments, procedures, treatments, etc. as a whole, because it becomes overwhelming. This little piece of advice has helped in so many ways.

So Toby has been reading this blog and decided to bring me an excellent care package that included Carnation Instant Breakfast, herbal teas, a stuffed mascot with the wildest hair style one could imagine (Toby wrote that she hoped my hair did not come back like the mascot's), and a great book titled "The 2,548 Best Things Anyone Ever Said." So in light of the book and Toby's advice I'll leave you with a quote in the book that I feel is appropriate.

"It is only possible to live happily ever after on a day to day basis."
- Margaret Bonnano

Thanks Toby!

Indulgence - My Recovery Car

2008-08-19T22:17:00.000-04:00

OK, this is not about just medicine, nausea, white blood cells, and all the other things that seem to take over one's life when cancer happens. There are some other things that go on which constitutes life in general. There can be indulgences too.

My son Stephen has turned 16 this year. Thus, the most important thing to him is driving (well possibly the second most important, after all there are girls to think about!). So there is a need for another car in the family. As such I thought I'd get an economy car, something small that I can use for a commuter car while Stephen uses my other car to get to & from school. The logical choice in my mind is the car I bought this past Sunday. A very slightly used 2006 Mini Cooper S. Dubbed the "Recovery Car" by my nephew Andreas. I've been smiling ever since I got it. Driving can be fun, even in the Washington metropolitan area (believe it or not).

Life is Good!

Improvements - Some More of Them

2008-08-19T21:56:00.000-04:00

I'm now a few days into my "normal week." I've gone to work the last couple of days, my white blood cell count is back to normal, I can eat, and I feel human again. It sure feels great to be back again!

So, its time to review some of the positives that have happened to me having gone through 2 rounds of chemo. These are symptoms that have improved so far. In this me versus cancer "soccer" game, it looks like I'm scoring more goals. So here are some descriptions of these goals.

1. Prior to chemo I had a constant pain in my chest. It was gone after Chemo 1 and remains gone still.

2. I can still swallow more in one gulp than prior to chemo.

3. I have an appetite and feel hungry, which hasn't happened for a couple months now. This is new after Chemo 2.

4. I have actually been able to eat chicken. Sunday evening I ate a couple of chicken enchiladas and tonight I ate some of my mom's famous chicken paprikash. I even went back for seconds. To put this in perspective, I have not had any meat for quite sometime as it was too difficult and painful to swallow. So this is major to me!

5. I have gained weight since last week. (Yeah me!)

Please excuse me while I celebrate these goals as if it were a soccer game on Telemundo:

GOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOAL!!

Thanks for indulging me, I needed that!

So, bottom line, there is improvement in my cancer battle. Given the "fun" that is chemotherapy, it's great to see progress. My oncology surgeon surmises that these symptom improvements are indicators of the tumor shrinking. I'm a believer in this. Thus, I feel empowered to tackle the next round of chemo and I am looking forward to the next symptom improvement afterwards.

Recovery Week 2 (RW2)

2008-08-15T16:45:00.000-04:00

Recovery Week 2 (RW2) has gone (in comparison to RW1) very well. We fought off the low grade fever during the early part of the week successfully. It reached 100.1 once but otherwise never got over 99.8 (remember that at 100.4 I'm supposed to get in touch with the doctors). We were also able to keep me out of the hospital (not a great feat for the normal population, but we're dealing with the chemo kid here!). It would seem that I started to come out of chemo funk-dom around Weds afternoon, and as of this writing (Friday morning) I'm feeling human again (no nasty remarks from the "peanut gallery" please). I was able to pack in the food yesterday fairly well and actually gained 4 lbs in the course of 1-1/2 days. When you think of the joy that many have expressed to me with that statement today, you then start to realize how absurd this really is. Is there anyone that you know that would be happy to have picked up over 4 lbs of weight in a day?!? Well you may be reading about one of the very few in America!

OK, lessons learned this week:

1. Carnation Instant Breakfast (the powder) in small glasses with a straw is a life saver.

2. Herbal teas really help keeping me hydrated.

3. After 3 days, the side effects of Nuprogen keep me awake at night.

4. My mornings are consistently better than my afternoon & evenings.

5. I love having my friends around me when I'm not feeling well. I really don't have a chance to feel down or sorry form myself. Even if I feel like kaka, the spirit around here help to keep my attitude up and a smile on my face (even when they have a little fun at my expense).

6. I'm told by the ladies that have been here over the last couple of weeks that I now know the effects of pregnancy. Things like the constantly changing taste buds, cravings for a particular food, nausea, tiredness, no alcohol in the diet (even though I did want a glass of wine a couple of times), aversion to the sight of certain things, etc. were some of the things I experience that they tell me are some of the grand fun and beauty of pregnancy. It really make me wonder how any family has more than one child!?!?!

7. Being without hair on your head has advantages. More on this in another blog entry as it has many things that can be discussed.

8. Family & friends really do rise to the occasion. The way these folks have rallied the last couple of weeks has been unbelievable. The care, the concern, and the support have been just phenomenal. I really love these folks (I don't know how or if anyone could get through this by themselves).

Finally, as I've said so many times in past writings, I am a very lucky and blessed man.

LIFE IS GOOD!

Recovery Week 2 - So Far

2008-08-13T14:51:00.000-04:00

Recovery week so far has had it's ups and downs, which is to be expected. Essentially my team & I have been battling a very low grade fever all week. However, we kind of expected it as I'm taking Nupegon shots daily. One of the side effects can be a raised temperature. Nupegon is a white blood cell enhancer, thus the need for it after my last chemo experience. All this said, I want to emphasize that in comparison, Recovery Week 2 (RW2) is going much better than RW1. As of today (Weds in the week), during RW1 I was in a fetal position, with a temperature that landed me in the hospital. This time around, I was able to take a walk around the neighborhood, ingest food and drink, hold an actual conversation, and smile. In addition, I'm actually having lucid thoughts (I'm sure this a shocker to many of those reading along!). The world is just plainly much better this time around. However, I'm not yet trying to be overtly confident yet, as this is still uncharted territory.

My care team this week has consisted of the Joan (the ultimate stabilizer in this go around), with help from a myriad of others. Those that had scheduled to stay with me (Dave-o, Pete, E-man, and Katherine) and those that are administering my shots at home (Joe, Pam, Cindy, & Vernie). The shot givers are a big help in that 1st they are all registered nurses; 2nd I'm a big wimp when it comes to shots; 3rd I've had a bunch of volunteers that are ready to administer a little pain my way in the form un-trained shot givers; and 4th I don't think I could do it to myself, which is the way that it is prescribed. Have I mentioned that I hate shots (and I'm a big wimp)!

My care team also took it upon themselves to, shall I say, de-clutter my house, clean out my garden, straighten up my garage, re-arrange my pantry, do my laundry, and probably some other things that I have yet to discover. Unbelievable! Those that have been to the house may not recognize the place any more!

Any way, the help and support over the past 1-1/2 weeks has been amazing. People rallying with their talents and efforts has been tremendous. I've said it before, and I'll say it again; I'm a lucky and blessed man. Life is good (even if I'm not feeling totally human at a given moment).

PS: The Olympics has been a great distraction too. GO WORLD!

Chemo Week 2 Done!

2008-08-13T10:07:00.001-04:00

So Chemo Week 2 (CW2) went much better then CW1! Between the help of Teej & Joan, Emily (my beautiful & courageous daughter), Dave-o, Pete, Katherine, Patty & Thom, and others I'm sure I'm forgetting, I was much better prepared for Recovery Week. Kaiser also added some medical things to help me recover easier. Things like hydration at the end of the week and Nupogen shots to boost my white blood cell count. So although CW2 was not a "walk in the park" it was much more successful than CW1.

PS: In the picture with TJ & Joan, I'm wearing the infamous blog hat.

PPS: The other picture has Dave-o on the right, TJ on left & yours truly in the middle!

Chemo Week 2 So Far

2008-08-07T10:52:00.000-04:00

Chemo week this time around has gone much better so far (knock on wood). Having TJ, Joan, & Emily around has made all the difference. The three of them have taken such wonderful care of me. I'm hydrated, fed, and rested and I am feeling about a 1000 times better at this point in time when compared to last chemo week. I also think that having friends here helps with attitude and distraction from the 3 minute reminders that Ethel brings.

Last night we had a movie evening watching "A Fish Called Wanda." The running joke was that TJ & I would relive the fish swallowing scene with Emily's fish tank. She managed to booby trap her room to safe guard her little loved ones.

Today should bring more of the same, and hopefully continued success through this chemo week round. Tomorrow afternoon Ethel goes away again...yeah!

Improvements

2008-08-06T10:35:00.001-04:00

I've noticed that in my recent writings that there has been a lot of focus on events surrounding my treatments and the help that I've been getting. So I thought that I'd write about a couple of symptom improvements in that came from the 1st round of chemo. These are very exciting to me, although they may seem somewhat mundane to the overtly healthy types.

First improvement noticed during my normal week (the 2nd week after turning Ethel in) was that swallowing seemed easier. I was able get down larger amounts without pain or discomfort. Although I have not ventured to try a steak! This of course made eating easier and less time consuming. I was also able to gain 3 - 4 lbs that week.

The second improvement was the the loss of a seemingly constant pain/ache in my chest at the base of my sternum. This pain had been persistent for about a month to 6 weeks prior to chemo and would really hurt whenever I hiccuped. However it seems to have disappeared, hopefully for good.

I look upon this as a couple of accomplishments on my road to victory, kind of like scoring a couple of goals in a soccer game. Although the game is not over yet, the goals certainly add to the momentum that can lead to victory. I like the advantage this gives me. Life is good!

Can't wait to see what accomplishments this chemo round brings.

Ethel is Back

2008-08-04T18:06:00.000-04:00

Chemo happened today. It took about 6-1/2 hrs this time. Met with Dr. So and it looks like there might be a change in the chemo/radiation/surgery schedule. Dr. So will consult with Dr. Pelton to discuss options. Also, Dr. So has added additional hydration at the end of the week as well as Nuprogen shots to help me thru chemo recovery. I believe this will help avert some of the problems I had last time.

I read some more of Lance Armstrong's book "It's Not About the Bike." It turns out that I'm sharing one common chemo chemical with him, Cisplatnum. If it helped him, it most surely can help me too.

I got to sit next to a wonderful older lady during today's session, however I did not catch her name. She had immigrated from Cuba many years ago. She had proclaimed that she was coming up on her birthday. After a number of very bad guesses, some based on flattery and others just mistakes staring at the age of 70 & working my way up. I finally gave up at 80 to which she let me in on her secret. She was about to turn 88, which in truth seems much older than she appeared. Unfortunately she was in for lung cancer. I wish her luck in her battle!

TJ & Joan held my hand thru today and will continue to do so through the week. I think they are kind of spoiling me. It's great to have them around. I have to believe that this round of chemo will go better than the last just because of their help and positive ways. Thanks goodness they are here.

Thanks to E-man and Lori for touching base and calling me today while at chemo. It always is nice to pass the time with friends.

Chemo Tomorrow

2008-08-03T11:06:00.000-04:00

Tomorrow starts Chemo again. Angst and trepidation about the next couple of weeks surrond my feelings. I get to have my ambulatory pump companion, Ethel for the week again. As much as I hate her, I keep remembering that she is actually trying to help cure me. So I need to get my attitude toward her turned around. OK, I'll save the hatred toward her to later in the week when I'm especially tired of her 3-minute reminders of injections.

TJ & Joan are here to help me through this week. They're the silver lining to the chemo cloud. They arrived yesterday and we hit a barbecue picnic thing at another best friends' house, Pete & Martha. I'm sure with Teej & Joan here things will go better this week. Keep your fingers crossed!

Just remember, LIFE IS GOOD!

My New Hair Style

2008-08-02T13:31:00.000-04:00

My hair started falling out this week. It started to go on Tuesday. By Wednesday I could pull out a bunch of it at a time if I grabbed it. It's a pretty weird thing to have happen. I kind of expected this occurrence, so I had an agreement with my kids when the time came. We agreed that they could shave my head. Designs were welcomed and fun was to be had. This is also a way for us as a family to take control of yet another part of this cancer adventure. So, Wednesday evening we did the deed. Stephen & Emily took part in the festivities, as did my buddy Dave-o and his wife Katherine. Many laughs were had (mostly at my expense), and we turned it into a rather joyous occasion. Afterwards we had root beer and orange floats. It was indeed a good time. Life is good!

Enjoy the pictures.

The Package (My Blog Hat)

2008-07-26T23:55:00.000-04:00

One of my best friends in this world is my old college roommate TJ (aka: Teej, ET, Tim, Timmy, and many other non-G rated names we won’t go into). He and I have been in each other's weddings, we've raised a bunch of "trouble" together, we've shared many laughs, shared a few tears, killed many flies together (inside joke!), have many inside jokes, and so many other things over the years that I should end this list with an etc. now. TJ & I can go for long periods of time without talking, and then when we finally get together things pick up where they left off when last we saw each other. He's that kind of friend...rarely found, always cherished. TJ has also been "follicly challenged" (balding or bald) since the first I met him. Since there is a strong prediction that I will go bald (which as of this morning seems to be coming true), I e-mailed TJ for some possible fashion tips. I was expecting the answer "need more leather" (another inside joke about a visit to Poseurs Club in Georgetown sometime back in the mid 1980's). However, TJ came back with a one word answer..."hats." So, TJ has taken it upon himself to send me hats to help with my likely new hair style (or non-hair style as the case may be).

As most of you may know by now given my last blog entry, my week last week was less than perfect! When I finally got home from the hospital there was a package waiting at the door. The return address was TJ's. So after the Saving Crew left me on Friday, I opened the package and found inside it one of the most ... um ... well, one of the most ridiculous looking hats you could imagine. (Time to be ready for a couple of really obscure references!) The hat looks like a combination of the hats worn by Gene Hackman as Popeye Doyle in the "French Connection" and the the title character's from the old TV show "Kolchak, The Night Stalker." To add to the ridiculousness of it, TJ had attached a number of pins to it. Not just any pins, but some pins that we had collected with our other roommate (and another of my best friends in the world), Dave. These pins used to hang on a bunting that we hung off the home-made bar that resided in the living room of our off-campus house (classic and cliche for the times!). Well TJ chose these pins quite carefully from the numerous ones that still reside on the bunting, and each has meaning in the form of even more inside jokes or incredible events during those years. Basically, the pins make the hat! At least for me.

So, after opening the box, all I could do was laugh ... then laugh some more ... then laugh even more. It was a perfect ending to the Kaka week that I had just been through. After getting my wits about me, I called TJ immediately, which started the laughter all over again. We laughed for about an hour on the phone, reliving the meaning of each pin. The laughter really was just great!

After a little more discussion, we finally got around to agreeing that this will be my Blog Hat and I would wear it while blogging here (which I'm doing right now).

Teej (and thus tacitly his wife Joan ) has promised that more thematic hats will be forthcoming along the way. I don't know if the laughter this one induced can be topped, but it will be fun to see what TJ (& Joan) come up with next!

Life is good!

PS: Joan has since e-mailed me. It seems that she & TJ are coming to stay with me the week of Aug 4 to help me through Chemo Week Round 2. I’ll probably feel like Kaka then, but I know I’ll get to smile with them around.

PPS: I’ll post a shot of my new hat as soon as I can find where the digital camera is hidden ... ugh!

Chemo Recovery Week …

2008-07-26T12:24:00.000-04:00

To quote the immortal Jerry Garcia, “…what a loooong strange trip it’s been.” I’m sure his line, like my week, was a bit chemically induced (OK more than a bit for both the line & the week). I’m also sure that Jerry’s "side effects" were more sought after than mine!

This week should probably be named the “I-Feel-Like-Kaka; I-Desire-Food-Like-Kaka; My-Mouth-Hurts-Like Kaka; Water-Tastes-Like-Kaka; Why-Doesn’t-This-Kaka-Just-Go-Away” Week (by the way, “Kaka” is another name for poop for all the non-parents out there). This may all sound like potty humor, but I assure you that there was nothing comical about the potty this week. So, as the formal name for it is long, so was the week, as is this blog entry too. So brace yourselves!

OK here goes:

Part 1. “Mission Accomplished”
OK, bear with me on this analogy if I misstate some of the historical facts. Picture if you will George W. Bush on the USS ENTERPRISE aircraft carrier after Sadam was ousted, looking rather smug with a large sign in the background declaring Mission Accomplished. "W" proclaims that the US force has saved the Iraqis in something less than 100 days, and now all is right with the world. Well I feel that I made the same gaff in my last post by even suggesting that the 1st round of chemo was complete when I thought it was! I deserve a very big "UM...DUH" after that! To all those that have received chemo, my apologies for my arrogance. I now have a new found admiration and respect for those that have done this before me (some I went thru with as a “care giver,” others I know individually, and those that I am not aware of). The 1st round of chemo only proved that the "prizefight" was not anywhere near over when Ethel left me. Ethel proved to be a bit vindictive in her absence, and it has taken until yesterday morning to even want to look at food, get out the fetal position, and feel even semi-human again.

Part 2. "The Recovery Week"

So I had spent the weekend at my sister's house with her, her hubby, her 3 wonderful kids, her huge Rhodesian Ridgeback, and my most benevolent mom (to be known as the Saving Crew). They had babied, nursed, fed, and cared for me all weekend and I thought I had it from there, so home I went. Lori came over Sunday evening and fed me, bought me some supplies and helped me feel even more human. So I was feeling pretty confident that Monday would go relatively well.

Monday arrived and getting out of bed proved to be a bit difficult. I did get up, but a bit late. I went to the kitchen with my Ethel induced hangover and force fed myself some food and water (get the feeling this is like prison at this point?!?). Well, I essentially stayed on the couch the entire day. However there was a high point. Amy brought the kids by for a visit. They stuck with me for a couple of hours and I really enjoyed it. We just plain hung with each other, joking, talking, goofing, and all the almost normal things we do. I was supposed to get my blood work tested on Monday, but after the kids left I was a bit low on energy. So it was to wait until Tuesday morn. To bed I went!

Tuesday I awoke with all sorts of vim and vigor. Feeling as good as "OK" I decided that this was my Carpe Diem day for the week. I rolled (well kind of rolled) down the stairs after one of those great showers that invigorate you (kind like an Irish Spring soap commercial). I ate, drank fluids, packed some food for later and off to "blood work" at Kaiser I went. This is where I met the newest med tech that Kaiser had on staff. We'll name her Lucy (notice a theme), There for only 2 days I believe that I may have been the 2nd or 3rd costumer on her resume. Lucy was being trained, and she wasn't very confident in her protocol: forgot to put on her gloves, provided a loose tourniquet, and fumbled with much of the equipment. I looked at her trainer with my best "are you sure you want to put me through this?" look, but we were all in this together, so I bucked up and decided to help in Lucy's training. As the needle came closer I started to have second thoughts (another "DUH" moment), and looked away awaiting the inevitable failure to find the vein, the eventual working of the needle, the possible re-stick and the inevitable repeat of the process until the trainer would finally take pity after seeing me wince for the 3,457,362-nd time. Well, before I knew it, Lucy had actually done the deed and was drawing blood with nary a wince on my part. Lucy was able to draw blood from me with absolutely no pain felt by yours truly. What luck, life is good! After professing my bravos to Lucy, she looked at me in a shocked manner as if her accomplishment even surprised her, and I was again on my way. Off to the Office I was heading, still feeling full of vim & vigor even after the Lucy-stress had been heaped upon my psyche. However, after the good & painless fortune of the experience I felt nothing could stop me now.

Upstairs from the lab I ran into an old friend Maria and 2 of her 4 step daughters (I mention the numbers because the 2 daughters I saw are part of a set of triplets and were elem school classmates of my son). We caught up for a while and Maria offered herself as a resource in my cancer adventure with the idea of calling her at the drop of a hat at any time if I need help. I'll say it again, I am truly blessed and lucky! After our goodbyes, off to the office I went. I spent a couple of somewhat productive hours there, but I could feel the energy dwindling. Thus, to home I went.

The rest of the afternoon was spent face down over the toilet bowl, cussing, pissed off, and spewing stuff. Then came the call from my saving angel, my sister Christy. After about 2 seconds we agreed that I was to head to her house. Outside in the heat again, I loaded some provisions in the car and drove out there. (A quick acknowledgement to my next door neighbor Reggie who offered to drop everything and drive me. In hindsight it probably would have been smarter to take him up on it. Have I mentioned that I'm stubborn?). I spent the rest of Tuesday in a fetal position on Christy's couch, however happy to have the love of the Saving Crew around me again.

Then came Wednesday... more fetal position, food a necessity but definitely not a desire, water tasting funny, smells killing me, and ... well let's just say Kaka and leave it at that! The Saving Crew kept an eye on me all day, while I was looking vindictively back at the world. Then, Weds evening occurred. As my mom was saying good-bye for the night, she shook my hand and her mother instincts kicked into high gear. She single handedly (literally) determined that I had a fever (another dread for chemo patients in general). It was 102.3 on the thermometer. We verified it with another thermometer just to quell my arguing against the reading. The Saving Crew was very patient with me! They were also determined to make sure that I was taken care of appropriately. After calls to Kaiser, then another round of cussing at the toilet while spewing, Christy and I were off to Kensington Kaiser at 2100 (that's 9:00 PM for you non-military types). My temperature reduced mystically to 100.9 on the drive, but it seems that my white blood cell levels were below the safe threshold. So off to the hospital ER I was sent. Christy & I got there at midnight. For some reason my temperature dropped back to normal between Kaiser and the ER without any assistance from Tylenol or the like. So, more blood drawings, a chest X-ray, and a feeble attempt at a urine sample (TMI?) from a very parched patient. Christy stuck with me until 0300 (3:00 AM for non-militaries), but since it was determined that I was to be admitted for a few days, we agree that she should head home to try to get some sleep (Have I said that Christy is my angel/hero/greatest support?!?). I spent the rest of the night with nurse Bob trying to coerce a urine sample from me. This was fine except that I had not had anything to drink since around dinner time (a small glass of flat Ginger Ale at that), thus none was forthcoming. Not to add any pressure, or to threaten, but Bob's response to my numerous failed attempts was to suggest that he may need to provide a catheter to assist in acquiring his coveted sample. My response was dry, but firmly stated "Uh....no!" I never did satisfy his quest to fill Bob's hallowed cup! Having avoided the catheter, I look back at this as a victory, albeit a small one, on my part. Sometimes a guy has to take what he can get!

Thursday morning at 0600 (6:00 AM!) found me wheeling through the Holy Hilton Halls (actually known as Holy Cross Hospital) at breakneck speeds lying flat on my back on a gurney from the ER to my luxury room in the sky (a single on the 6th floor, the Chemo ward). The skill of my driver was admirable as we moved quickly with nary an accident. I met Edith the nurse, a very nice woman that I got to know for, well an hour and I never saw her again. Then at 0700 (oh enough already if greater than 1200 then subtract 12!) I met my own "Florence Nightingale" Nurse Joan who took care of me during days (she's fantastic at her job and very nice). Basically I spent Thursday lying in bed receiving electrolytes and antibiotics intravenously, having blood drawn, getting my vitals taken, providing a coveted urine sample, swallowing barium for another CT scan, getting the CT scan, ordering and trying to eat food (eating most of it), and getting visitors and talking on the phone. A pretty full day, I slept pretty well that night.

Friday brought more good news (no ... it really was really this time), I was to be released a day earlier than expected. The release time of that evening was caveatted that no infection would show up in my last blood samples and that I had to get a final shot before I go (man I really hate shots) and they could call me back after the release. So while waiting for the warden to throw open the gates, my day was very similar to the day before, but you can substitute the CT stuff with reading and sitting in a chair by the window. What a luxurious life of leisure. I was finally enjoying life with my every need cared for, my appetite returning (well at least food was starting to taste ... OK), and my other ailments seemingly improving, and then they decide to throw me out. I shouldn't write this but I actually would have like another day at the Holy Hilton. Oh well, home and feeling much improved is also a wonderful place to be! Thanks to the Saving Crew for picking me up!

So here I am, at home again, enjoying my time, wearing my new blogging hat (another blog entry-to-be), wearing my Life is Good t-shirt with the soccer player doing a bicycle kick on it, listening to some really good music, writing (!), eating, drinking juice, talking to folks on the phone, receiving the generosity of a neighbor/friend who went to get me some whole milk, and washing my hands a lot. Things are not Kaka....today. Well I'm off to get a couple prescriptions filled.

Thanks to my Holy Hilton visitors for the moral boost (E-man, Terry; Lori; Mom; Christy; Susan, Joe, Hanna (one of my star players on the greatest 3rd & 4th grade soccer team in the world), & Michael). Thanks to Thom & Patty & family for watching my house whilst I was away. Thanks to Julie for the milk run upon my return. And a special thanks to two of the greatest nurses going; Joan & Sylvie who helped me through a transition from Kaka to actually looking forward to a meal and feeling a little better than OK.

Chemo - Round 1 Done

2008-07-20T16:21:00.000-04:00

Thank goodness! I was able to keep it together, but am happy that Ethel is not around anymore. Her incessant talking really began to bug me around Thursday last week. Needless to say that our time apart will be appreciated by me! Having been through this round there there are some lessons that I have learned.

1. I am not superman! My sister took me to her house after Ethel was removed and I stayed there for the weekend recovering. It was necessary, appreciated and a great help!

2. Hydration during chemo is very important!

3. I need to eat more! This has been the mantra for quite a while now, and I just have to get fully committed to it and "just do it."

4. Chemo is hard! Don't let anyone convince you otherwise! However, with willpower, desire, and help you can get through it.

5. Chemo does weird things to you. From what I hear it's different for each person. My senses of smell and taste are very different right now. For a while my teeth felt like they didn't fit in my mouth and my tongue and gums have a very weird sensation to them. This is just to name a few.

So in this prizefight of chemo versus Steve, I think we both were able to land a few blows. I've learned some things for the next round and I think I'll do better then. Although, I'm expecting the toxic build-up might make the next round a bit more tough. However, we'll see! After all, I am a bit of a competitive person and I intend to win this bout.

Chemo Picture - Day 1

2008-07-18T09:36:00.000-04:00

I'm posting this a little after the fact! My chemo nurse Donna is loading me up. The hunky dude in the foreground is, of course, yours truly. I thought it ironic that the chemo nurses wear hazard clothing when they hook you up to something that they're injecting into your body! Seems kind of wacky that the medicine that cures you is also dangerous to the healthy! Where's the logic in that?

The Nice Surprises

2008-07-16T20:18:00.000-04:00

I am a lucky man in many ways. I have the love and support of family, friends, and seemingly many others given the responses to this blog. People show this in the darnedest ways. Here's a couple of pretty cool examples.

My neighbors have been asking if I need anything, any help. They've been offering to help me with my shopping, stopping by to check on me, calling from the store to see if I need something picked up. I even had one neighbor offer to help with my laundry (she must know that I hate doing laundry more than any other chore!). I haven't taken advantage of these offers yet, but I'll bet that day is coming!

Well the neatest surprise was last night. I got back from hanging with my daughters after work at around 2000 (8:00 PM for you non-military types!). I looked past my front door and found a ladder leaning against my house. As I looked at the site a bit quizzically, I noticed my neighbor Cary at the bottom of the ladder. Then I notice my neighbor Reg at the top. After coming to my wits, I had to ask what they were up to. Well these two "angels" were cleaning my rain gutters. Wow, talk about a nice surprise! I gave them each a beer in return. It seems like a minor offer after they took it upon themselves to help me out in such a nice way. Thanks guys!

Life is good in many ways, and I'm truly blessed!

Ethel the Wonder Pump

2008-07-15T21:36:00.000-04:00

So it was decided today that I should call my "man-purse" (pump & 5FU) companion "Ethel." So Ethel it is. Stephen has given her some personality with a loving face looking up at me. I feel so loved!!!

I went to work today for a few hours. It was good to keep some normalcy and see everyone. After work I hung out with my girls, introduced them to Ethel, and played a couple of board games. It was great to see them.

I was able to muffle Ethel enough last night that her pumping noise (her way of talking to me!) didn't keep me awake. She consistently speaks to me around every 3 minutes. She makes a sound like a small receipt or label maker printer. So muffled she was!

Anyway, the 5FU continues its way into me to work its "magic" and forge to the cure. I am feeling pretty good so far.

Chemo - Day One

2008-07-14T16:22:00.000-04:00

The road to the cure started today.

I had to do a little prep work yesterday and this morning first. First up, believe it or not I am now a steroid user, dexamethasone twice yesterday, today and twice tomorrow. I can feel my muscles expanding as I write! Actually it is used to enhance the anti nausea meds and to help fight fluid retention. Then numerous anti nausea meds prior to chemo this morning, and numerous more for tonight, tomorrow and into the near future.

OK on to the chemo experience! Start time 0800 (that's 8:00 AM for the non-military types!). I get to meet a number of chemo nurses (Donna, Delaney, and Tiffany). Donna was my main care giver and she was very nice and all business. Delaney relieved her at lunch time. Then, it turns out that I had an acquaintance from St Catherine's, Tiffany Sowa. She checked on me a bunch of times to. Nice to have a familiar face around on staff! Donna & I went through a bunch of stuff together, information on side effects, what to expect, what I expected, nutrition, hair loss possibility, etc. Trying to aborb everything is like drinking through a fire hose! It's a bit much. Then started the actual chemotherapy.

First up, 1000 ml of saline to hydrate me, followed by Cisplatin, followed by 1000 ml of saline, followed by, um, er, um, a bathroom break! OK back in the chemo chair, and on to Taxotere, followed by a 30 ml line flush to make sure all the chemo is fully in my system and not left in the tubing. This took about 6 hrs.

Now comes the fun part! The last drug to be injected is Flourouracil, otherwise commonly referred to as 5FU. I'm not sure I want anything injected in me that's known as "FU" but there you have it. Not much choice in the matter! So the method of injection with this is a little different than the other 2 parts of the cocktail. Where the 1st two were injected in me completely today, this stuff will be injected very slowly over the next 4 days. Let me explain!

5FU will be inject via a portable pump that I will carry with me 24 hrs a day for the next 4 days (to be returned on Friday afternoon). The pump is programmed to inject the stuff at 2.5 ml per hour, all day every day whether eating, sleeping, or showering. I have a constant electric companion complete with its own chemo reservoir. I won't be lonely this week!

So we finally left the chemo portal at 1530 (that's 3:30 for the non-military types!), and now I'm home. Getting 5FU still, and about to embark on a bunch more pills to help keep the nausea from happening. So far so good. Hope they continue to work!!!

Most of round 1 is done, more to come.

Thank-you's to Lori for taking me there, bringing me lunch, hanging with me, and getting me home; Emiliano for the phone conversation and your special brand of humor; Dave-o for calling to check on me; and many others for your support. The love continues and it's great!

Extra Parts - The Power Port

2008-07-13T18:05:00.000-04:00

Last week I had a "Power Port" put into my chest just below the skin. Here's what it's supposed to do. It provides a convenient location for injections. In my case, it allows my chemo crowd to inject me through my skin without having to go directly to my arm veins with the needle (save the arm veins!).

Here's what it looks like. Picture a triangle the size of a quarter or so on its face. It's about a 1/2 inch thick and its purple. In the middle of the triangle is a circle which is the pad where the needle goes in to. Coming out of the triangle is a tube the size of a spaghetti noodle. If you should be able to see my chest on the upper right hand side, you may notice a bump on my skin. That's where it is!

So the tube that comes out of the triangle is the "pipe" that takes the injection from the "PP" to one of the main veins to the heart. Then the injected stuff makes its way through the entire body.

How cool is that!?!?!

Anyway, this is supposed to make chemo easier. I figure I'm that much closer to being a bionic man!! We'll see how it works tomorrow.

How Did I Get Here?

2008-07-12T09:51:00.000-04:00

The question has been asked by many (me included), "How did I get this cazy thing?" The answer is - we may never know!
There are some basic facts regarding this type of cancer. So here's what I can tell you:

1. In 2007 there were aproximately 15,500 cases of adenocarcenoma in the esophagus across the US. Of those cases, about 12,000 were white males.

2. Most folks that get this have had acid reflux desease (GERD) for much of their life.

3. The typical age group that get this are in their 60's or older.

4. Other contributors are obesity, smoking, and heavy drinking.

5. There is a bacteria type that can be in the stomach (I think it's called H Pylory Bacteria) that can cause GERD. This bacteria can be a contributor for this cancer.

So, given these basics, the only real contributing factor that I have for this type of cancer is....I am a white male.

My surgical oncologist basically said that we may never know why. My answer to that is fine, let's just get rid of it!!!

The Way Forward

2008-07-12T09:48:00.000-04:00

OK, test are done. Cancer is staged. I am a Phase 2, T3, N1 adenocarcenoma of the esophagus cancer patient. A new title to add to my resume!

During the diagnosis phase of this adventure, there were many gyrations as to how to proceed with the cure. The first course discussed was surgery then chemo/radiation. The notion was that the cancer had not progressed past the esophagus & stomach so removal of the infected area was a good way to start. Then get rid of any nasty's roaming around my body with the chemo and bombard the area where it formally resided to get rid of any cancer cells that may have been left behind from the surgery. This went by the wayside as all the results came in and recently published studies were looked at.

Now the way forward is to start with chemo for a couple of cycles (each cycle is about a month long). This will be followed by a couple more chemo cycles and 25 rounds of radiation. Radiation will be given daily, 5 days a week (weekends off) for 5 weeks. Then surgery when all this is done. I'm not sure what the follow-on to surgery will be yet. I guess we'll find out!

How the Adventure Started - basic facts to date

2008-07-12T09:00:00.000-04:00

So I thought I'd bring everyone up to speed as to how this started. It seems pretty sudden when I look back at it.

A few months ago I found that I had trouble swallowing red meats. It hurt on the way down, kind of like when you swallow water with a bubble of air at the same time. The pain in your chest can be very nasty! Well this happened only occasionally, and so I thought that it was something that would go away. Little did I know!! After a while, it became more consistent until I finally decided to go to the doctor. (Many that know me well know that that was a major decision on my part as I really hate to go to doctors!). The initial diagnosis was Steakhouse Syndrome (or Shatzke's Ring) which really is a pretty benign thing, so there was no real cause for concern. It would be verified by an Upper GI Barium Swallow tests and then on to the cure. Yippee! Well, so much for the easy way out!

The adventure now started its real beginning. First up, an endoscopy. A tube going down my throat with camera & tool to get biopsies. I was knocked out for the procedure, and when I woke up, I was told that I have a tumor in my esophagus and upper part of my stomach. Diagnosed as cancer on June 9 by the pathology report! Poorly diferentiated Adenocarcinoma with ringlet cell features to be exact.

Next up, a CT scan of my abdomen with more barium to swallow and an iodine like substance injected into me to give contrast for the photos (no need to smile, they can see right through that). The tumor was verified but with a bit of good news. It had not gone to anything near by based on what they could see.

Next up, another CT scan of my upper chest. This time there was no need for the barium (yeah!), but another contrast injection was needed. (I'm beginning to feel like a pin cushion!
Next up, meetings with an Oncology surgeon (Dr. Pelton), Medical Oncologist (Dr. So), and Radiation Oncologist (Dr. Parrazzo). All these were consultations to discuss the way forward each having their own opinion as to the best way to proceed. Surgery first then chemo & radiation, or chemo/radiation first then surgery. Bottom line, I need more tests to get this thing fully diagnosed!

Next up, an Endoscopic Ultra Sound (EUS). The EUS is very similar to an Endoscopy except that they go down your throat with 2 instruments. The first is the regular camera, which has a smaller diameter tube. The second is the Ultra Sound tube which is a bit larger in size. I was knocked out again for this and when I woke up, the preliminary report indicated that the tumor had gone most of the way through my organ walls and that there was one local lymph node infected and another that looked suspicious.

Next up, a PET scan. Here they inject you with radioactive glucose and then wait for an hour. Then your put into a tube similar to the CT scan machine. The bottom line is that the glucose will be attracted to cancer deposits in your body, "attach" to it, and the radioactive stuff will light it up. It will show any cancer activity that is greater than around a 1/2 cm. in size. Good news from this, nothing showed up!

Finally, the way forward is decided.