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.