Chicken Soup

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

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

Chemo is DONE!

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

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

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

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...

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

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

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

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

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

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

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)

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

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

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

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)

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

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

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"

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!)

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

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

Ollie, My Second Roommate

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!

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

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

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!

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

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

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

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

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

Post-surgery: Day 3

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

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

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

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

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

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)

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

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

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.

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

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

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

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

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

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

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

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)

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

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!

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

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

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

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

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

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.