The start of a new normal

Its hard to believe that we started on this journey only about 4 weeks ago. The path has led us to making what has been the largest decision of our lives. We have come to the conclusion that we want to use the St. Vincent's hospital network - Dr. Birhiray, medical oncologist, Dr. Liebross, radiologist, and Dr. Freeman as thoracic surgeon. All came highly recommended. Our final choice was between IU Medical and St. Vincents. It was a tough decision as you compared the national reputation of the teaching hospital against the reputable, regional, very "people oriented" hospital.

After making the decision, we thought, "whew, that's over. Now we can relax for a couple days"...I had plans of getting us plane tickets to get out of town for a couple day get-away to... forget it all. Well, life had other plans.

We met with the radiologist today for the initial consult The recommendation is 28 days of radiation encircled by chemo for a week on either side. This is no longer an academic exercise to be researched. Its now reality.

The meeting with this new doctor, of course, netted yet another infamous "Roger moment"...we were questioning the doctor about the radiation and if it had any toxicity for people around Roger, i.e. me. The radiologist responded no, but we should ask the oncologist about the chemo...there is a chance that the chemo drugs might be toxic for "intimate" relations ( um, me again). Mr. Suave Roger Wethington simply responded to the doctor, "Well, I guess that just means more sex with prostitutes". The doctor about fell off his chair with shock and then almost fell off his chair with laughter. Here we are at St. Vincents...a catholic affiliated hospital...and my hubby decides to offer up that he'll just have to have more sex with prostitutes. NIIIICCCCEEEEEE. Only Roger. At some point later in the conversation, when I had hoped we had recoved from this little "roger moment", Roger asked the doctor how he would compare IU and St. Vs. The doctor responded casually that Roger would have to go to IU for the prostitutes as the nuns at St Vs didn't really get into that. They both thought they were sooooooo funny. (This may be a longer process that originally expected.)

Roger has decided that he does NOT want the feeding tube initially recommended during radiation. If his esophagus swells and closes, then he will ask for the feeding tube. For now, he doesn't want it.

Today, was a very "real" day for us both. It left me speechless and feeling like my heart was being crushed as I realized there was no "ramping up"or getting ready or moving into this gradually. You're in. Period.

The new normal has started. Roger is tough. Roger is healthy. Roger will be fine....of course it will suck. He'll be incredibly uncomfortable, sick, not happy, etc. but he's tough, young, and healthy.

The schedule is: Monday: another meeting with the radiologist to "map the radiation field". Tuesday meeting with the thoracic surgeon. Wednesday outpatient procedure with the surgeon to implant a "port" through which Roger will receive chemo and other fluids as necessary. Thursday meeting with the oncologist to possibly start the chemo. Radiation will start the first of the following week. Roger should be done with the chemo/radiation by October. There will be 3 weeks "recovery" and then surgery. He will probably be in surgery towards the beginning or middle of November. Hopefully, he'll be feeling much much better by the start of 2010.

Keep sending all the positive thoughts and love. Feel free to call Roger. He is open to answering questions and doesn't want anyone to be afraid of asking him questions. Remember he feels fine and wants to continue to be treated as normal as possible. If you don't have his phone number, give me a call or send me an email and I'll forward his phone number separately.

I am thinking about pulling together a very VERY impromptu cookout - If i can get it all together quickly enough, I'll make calls and will send out emails. At the moment, I'm thinking Sunday evening...before the world completely changes. Will let you all know what I'm thinking. More tomorrow. We're both a little worn out. all our love, A&R

2nd opinions

We met with 2 different oncologists today. One within the St. Francis hospital network and one within the St. Vincent's hospital network. We started this journey within the IU/Clarian hospital network several weeks ago. So - that's three hospitals, 5 doctors (3 oncologists and 2 surgeons)... I'd love to say that we absolutely know the direction to take...but we don't.

Here are the basics: all of the doctors seem to suggest a combination of chemo/radiation and surgery. The approaches to chemo/radiation all appear to be the same. The biggest difference we learned today was that one of the oncologists (St. V's) recommends Roger having a food tube surgically inserted into his stomach BEFORE chemo starts. He said he does this with 90% of his patients - especially those with esophageal cancer - so that they can get the nutrients, vitamins, and calories they need. Apparently with radiation, the esophagus will become irritated and swollen and will swell so much that he won't be able to eat/drink. Um, not news we wanted or expected to hear.

The doctors all seem to agree that surgery is necessary. The surgery is to remove 2/3 to all of the esophagus. Very very aggressive - but the preferred treatment because of:

1. they say then need to remove the cancerous sites and at least 6-8 cm above/below the last site of cancer - the "cancer free field" - thus 2/3 or all of the esophagus is removed
2. removal of the lymph nodes and esophagus are believed to lead to a greater cure rate
3. the 2 or 3 incision surgery is preferred over the laproscopic surgery as it allows the surgeon to complete the procedure - reattach the organs - with the greatest success rate....fewest incidences of complications or leakage.
4. Roger is believed to have a cancer gene which means his likelihood of cancer returning is even greater
5. finally, Roger is young - the doctors would rather do this procedure (be as aggressive toward cure as possible) now while he's young and able to sustain the trauma

All of the doctors want to get started with the treatment process as soon as possible. We need to make a decision. All of the doctors seem to be good...some have more experience, some have better people skills, some hospital networks have better touch-feely-feel-good stuff, and some make you feel like a number. A diverse set of options.

The reality of the situation is all to raw. The weight of the decision is practically suffocating.

We truly appreciate the thoughts and feedback that many of you have provided. Will let you know our decision within a couple days at most.

breathe in...breathe out.

Today we are meeting with a couple other doctors (oncologists) for a second opinion. To date, we have spoken with 1 oncologist and 2 thoracic surgeons in the IU Medical network. The second surgeon, Ken Kesler, came highly recommended from Roger's sister's doctor who performed her surgery 20 some months ago.

Our research and the recommendations to date have recommended chemo/radiation, then surgery, then chemo/radiation. We had hopes that the surgery could be performed laproscopically. According to this Ken Kesler that does not appear to be an option. The technical limitations have to do with removing a "clear field of the tissue/organ" (esophagus) above the last site of cancer. In this case, it would be the lymph nodes. The surgeon believes the best way to remove this tissue, and the lymph nodes is through 2-3 large incisions as previously described in this blog. He emphasized that it would be the best way for the surgeon to reattach the stomach/remaining esophagus/throat to prevent any future complications due to leakage, etc.

If the cancer had not spread to the lymph nodes, then Roger would have been a candidate for lesser invasive procedures. This doctor indicated that Roger's cancer was unique in that the cancer is so early and yet has spread to some of the local lymph nodes. He further indicated if Roger did the recommended treatment, chemoradiation/surgery/chemoradiation that he should have a long-term cure-rate of 60%-80%...much better odds than we have seen in our previous research. Kesler suggested that we get started with chemoradation as quickly as possible and then later make our decision about the surgery.

This is such a big decision, we want to make sure we make the right one...that gets us to "cure" (as much as possible) while being as minimally invasive (painful) for Roger.

This is an incredibly difficult process. We'll see what the doctors say today. We have one other surgeon lined up for possible consult next week within the St. Vincent's hospital network.

Will write more later this evening after we have a 2nd opinion.

On the path towards treatment

It has been a very long several weeks with many more yet to come. We met with the thoracic surgeon and then the oncologist this morning. The good news is that the PET/CT scan showed that the cancer had not spread beyond the esophagus and the area lymph nodes. Very good news. The cancer is Stage II- T1,N1

We now have to wade our way through the decision-making process on the course of treatment. We are going to seek a couple other opinions regarding the different approaches. Most simply the question is 1. surgery or no surgery, 2) chemo/radiation when. This morning the doctors proposed chemo/radiation (approx 5-6 weeks), then recovery from chemo for approx 3 weeks, then surgery, then chemo/radiation once Roger recovered from surgery.

The proposed surgery would be the removal of the entire esophagus, moving the stomach up and then attaching it to the bottom of the throat. Obviously very aggressive & very invasive. He would have three incision sites - one on the side towards the back about 3 inches long, one on the belly from the bottom of the breast bone to the belly button, and then a third at the side of the neck. Hospital time of about 7-10 days, low-key-do-nothing downtime for 4-6 weeks, and then slowly moving back into a moderately active life. As anticipated, diet would change for a long time but would supposedly go back to "semi-normal". The surgeon said that the removal of the esophagus - while invasive - is the best assurance that the cancer will not return. So aggressive yes...but worth the risk???

One funny from the visit this morning (because you know we are about laughing) - as we were talking to the surgeon who wall all of 34 yrs old maybe. We were discussing the surgery and the incisions. Roger very earnestly and very seriously looked at the doctor and asked something about the incisions, the recovery process, working out, or something like that and then said "well, I need to know this and how I will be because I'm a swimsuit model". The poor doctor looked a little stunned with deer-in-the-headlights expression on his face...stammered...stuttered...and simply didn't know what to say. Finally the laughter pouring out of me gave the joke away. Poor guy.

The oncologist gave us a glimmer of hope that chemo/radiation could POSSIBLY arrest the cancer and "kill" (or whatever the term should be) the tumor(s)...Roger then asked "so that would mean the cancer was gone and I wouldn't need surgery"... Perfect world. Yes. But obviously we don't live in a perfect world. If we did...we wouldn't be going through this life-changing experience. I think the doctors, at least at IU Cancer Center, would prefer a combo of chemo/radiation and surgery. The doctors would like to start the chemo next week if we would agree.

We are going to seek a second, possibly a third opinion - in hopes that there will be overlap of opinion. Til then, the gathering of information continues.

Tonight should prove to be better sleep for a lot of people. Breathe in. Breathe out.

PET/CT Scan

Roger's PET/CT scan was earlier today. We thought they would give us results along with a copy of the test (so we could use it for a 2nd opinion)...they did not give us any information.
I think we both have mixed emotions about not having the info - you want to know...but you don't.

I spoke with the nurse who helped us last week to follow up on the doctors we are meeting with tomorrow. She said she would try to check Roger's electronic records in the hospital network to check on the PET scan results. I had hopes that I would have heard from her this afternoon with more info. Unfortunately she never called.

So as has been the process, we have more waiting to do.

Many thanks for the continued outpouring of love and support. The emails, calls, and blog posts have been wonderful.

As you can imagine, we feel a little lost, a lot unsettled, and generally exhausted with the weight of the unknown future. Trying to stay positive and focus on the solution while swimming (and hopefully not drowning) in an ocean of emotions. Easier said than done.

We're getting our list of questions together for the doctors on Wednesday. Additionally we are getting a list of possible "2nd opinion" doctors for the treatment aspect of this process. Not sure if we'll go the 2nd opinion route but want to have the resources identified if we do choose to go that direction. (thanks Katie & Tina for your help in finding other reputable oncologists).

Tomorrow Roger has the PET/CT scan to identify any other potential cancerous sites. Those test results will be provided to the surgery and oncology doctors for our meeting on Wednesday. They will at that time tell us what stage they believe the cancer to be, and what our options are for treatment. We think tomorrow is strictly testing and Wed will be more informative.

Each day...one day at a time. Breathe in...breathe out.

Test results

We got home from the hospital at 11 this morning. Unfortunately the doctors were only able to do the first procedure - the ultrasound. We learned from the test results that the cancer has unfortunately spread to the lymph nodes in the area of the esophagus. Because of this, they weren't able to do the resection to remove the tissue from the inside of the esophagus. So, we are heading down another path of treatment.

Tuesday morning, Roger goes in for a PET/CT Scan (scanning his system from bottom of his cranium to his thighs) to determine if the cancer has spread to any other lymph nodes. The next day we go in for a surgical/oncology consult. The doctors will discuss whether Roger should have chemo&radiation before surgery or after surgery. The surgical aspect of this is for the removal of the bottom portion of the esophagus, moving the stomach up, and reattaching the stomach to the new lower end of the esophagus. I believe they will also remove the lymph nodes in the area with tumor. The surgery, as you can imagine, is pretty serious. They will need to enter his chest (cracking the ribs) to access the area.

The doctor told us that the situation is serious but not hopeless. They were genuinely surprised that the cancer had spread - they thought it appeared to be in an early stage. They were encouraged that the lymph nodes appear small in size

Roger is resting now....process....trying to figure out which way is up. I'm processing...trying to figure out which way is up. Angie

So, its the day before the tests/procedure. I'd be lying if I didn't confess that we're both (ok ME) a little nervous/anxious. Its hard to deal with the conflicted emotions of wanting to find out what's what and at the same time trying to stay ignorant (sticking your head in the sand sounds awfully appealing). I don't believe there is such a thing as blissfully ignorant anymore - but maybe just plain ol' ignorant wouldn't be so bad.

As part of our "new normal", we are going to be modifying our diet...especially for the next few months. The upside is that we both will probably lose some weight. I'm looking for ideas/recipes for "soft foods"(creamed soups, custard, pudding, mac&cheese, milkshakes, soft cooked/scrambled eggs, pasta dishes). Although, maybe we WON'T be losing any weight when you look back at the list of "OK" food. If you have ideas, please send them my way. Things that we have to AVOID aside from course, rough, dry foods, include spicy/hot foods, gassy foods (cabbage, beans, corn, onions, chocolate), raw veggies, and acidic foods (citrus fruits/juices and tomato products). Baby food is a viable option, however Prince Picky is none-too-happy about this option. I have a feeling that I'll need to exhaust all the different ways to cook eggs, soups, etc before he'll even consider trying baby food ~ not that I blame him. There has to be a reason babys make faces when they eat the stuff.

As an aside - an extreme contradiction to the above diet - we went out for dinner last night...to the State Fair. I'm happy to report that we supported the pork industry, beef industry AND poultry industry. Now, we DID share most of everything...the pork burger, the ribeye sandwich, the corn-dog... we both might have had to have two ears of roasted corn on the cob each. Happily we managed to avoid the fried twinkies, fried cookie dough, fried peanut butter cups, and the new biggie this year, the chocolate dipped bacon sprinkled with powdered sugar (yuk). So, we consider the dinner a win and almost down right healthy since we avoided all the fried food. :-)

The procedure is 8:00 am tomorrow. Again, its out-patient, so we should be home by early afternoon at the latest. We should know a lot more after the tests (stage of the cancer, treatment options, etc). I'll post an update as soon as possible. Please think good positive thoughts.

Out Patient procedure

Many of you have asked if Roger will have to stay in the hospital this Friday overnight. Both procedures are out patient. He should be home on the sofa by 1:00pm Friday afternoon in theory. The upside to these procedures, according to Roger, is that he gets to have another dose of the MichaelJackson-notorious drug, Propafol. He had the same drug administered on 7/24 and was in "happy-land". The euphoria continued as we were leaving the hopsital that day...he went around giving hugs to the nurses. My hubby aka Lover-boy...leave it to him to get a quick squeeze before exiting the hospital. Fortunately, I'll be able to warn the nurses this time now that I know Mr. Huggie may reappear.

Thanks to all of you extra "helpful" people out there offering to take the alcohol off our hands and "dispose" of it in a "responsible" manner. Very kind of you. :-) We're doing our part in trying to get rid of the alcohol BEFORE Friday through consumption. We may be a little grumpy at the Wethington household for the next 2-3 months during this process. No alcohol combined with mushy, soft food...yum. Oh well, you do what you have to do.

We have a friend who recently went through breast cancer. She very eloquently put it that we will soon have a "new normal...and thats the way you need to look at it." Not so much what things used to be, but more this is the new normal we have looking forward. (thanks JulieJ)

Thank you for the calls, emails, and posts. We get a big dose of strength from all of your thoughts and support. Thanks again. Love, Roger & Angie

If you are at this site/blog, then you have obviously learned that Roger has been diagnosed with cancer of the esophagus. He went in for a "routine" upper and lower GI because his sister Denise has had a history of two episodes with cancer; the most recent incidence (about 20 months ago) ended up being stomach and esophageal. Denise underwent a pretty traumatic surgery/treatment back in November 2007 but is on the mend much to our entire family's relief. (Roger and Denise pictured below)

Here's the brief scoop: Roger went in for the initial tests on 7/24. At that time the doctor took a biopsy of suspicious cells in the lower third of the esophagus. Last Friday, 7/31, (we're learning to dislike Fridays) Roger received news from the doctor's office that the biopsy came back showing adenocarcinoma in the esophagus. We don't know the "level" or stage of the cancer. Apparently the esophagus has 4 layers. We're hoping the cancer is only in the first layer - the earliest stage. He goes back into the doctor on August 14th (back to hating Fridays) for another test, an endoscopic ultra sound; this test is supposed to tell us if the cancer has spread to any additional layers of the esophagus and lymph nodes. If the cancer has not spread beyond the first layer, then that same day Roger will have a second procedure called a Mucosal Resection, wherein the abnormal cells/tissue/lesion will be removed. This procedure is supposed to be pretty painful for the next several weeks as the esophagus will be "raw". He will be on a liquid diet (and um, no alcohol) for the first couple days, thereafter "soft" mushy food for 4 weeks, yum.

The good news is that Roger is young...most patients that are treated for this cancer are in their 70s which makes treatment more limited. According to the doctor's office and some Internet research, it appears that this type of cancer is starting to appear more frequently in the western hemisphere especially among caucasian males. The cancer often occurs as a result of chronic acid reflux. The acid reflux causes a degeneration of cells and the lining of the esophagus which results in a condition known as Barretts Esophagus. Barretts should be closely monitored as it can become a pre-cancerous condition. The tough part is that a lot of people have a high tolerance for heartburn/acid reflux and may let the condition go for a long time. The doctor's office believes Roger may have had acid reflux for many years - since he was in his 20s. The moral to this story for EVERYONE out there is to NOT ignore on going heartburn/acid reflux symptoms. Ironically, I was speaking with a friend of ours who said he has Barretts...he obviously is going to step up and have is annual exam.

Roger feels fine. No pain. Mentally? Hard to say. He's pretty laid back about the whole thing and tends to process internally. As many of you know, he's an even-tempered, easy-going guy and has been called "Mr. Don't Worry 'Bout It". Like any of us, I am sure he thinks about this in quiet times but he seems to maintain "it is what it is". He's staying busy with projects (and god knows he has tons of projects to do) - trying to knock out as many as possible before the 14th in the event that he is out of commission for longer than anticipated.

Ok - probably more than all of you wanted to hear but I firmly believe knowledge is power. We will continue to update the blog as we have more info. Thanks to all for your continued love and support. It means the world to both of us.