Wednesday, January 6, 2010

Here's where things are at, right now...

Hi to all, and thank you, for your kind caring and concern.

I thought I'd post a recap of where things are at, and where we're trying to get, to catch everyone up. If you don't mind reading a longer post, this one should get you up to speed, in case you only recently started reading the blog.

Ken's diagnosis is Stage IV esophageal cancer, (adenocarcinoma), with metastases to the bones, including the spine. Additionally, there are a couple of spots on his lungs, but it has not been confirmed that these spots are cancer. (These spots on his lungs 'lit up' on the PET scan, but PET scans light up all the time, and it doesn't mean it's cancer. PET scans identify metabolic changes that must be biopsied to be confirmed as either cancer or benign. It is only an 'assumption' on the part of the doctors that it is the esophageal cancer having spread to the lungs.) And, as Ken's doctor explained - if you live in Illinois, you probably have spots on your lungs! (Can I get an 'amen' from the chorus?) Lastly, there is likely a bit of cancer at the very top of the stomach, where the esophagus joins it. There is one long tumor that starts at the bottom of the esophagus, (where it joins the stomach), and it has grown upwards in the esophagus approximately 9 cm. The good news is that it has not broken through into the trachea, and it's not in the liver or the brain.

Ken has had chronic acid reflux for decades, and we've also learned that he has a small hiatal hernia. This is really hard on the esophagus. As it was explained to me, at the very bottom of the esophagus there is a muscle that closes the esophagus off so that the stomach acid can't come back up into it. It's called the 'esophageal sphincter muscle'. However, with a hiatal hernia, some doctors believe it weakens the LES and causes reflux, and that it can also result in the retention of acid and other contents above the opening, and these substances can easily reflux into the esophagus. Prolonged acid damage to the esophagus leads to Barrett's Esophagus, and can then turn into esophageal cancer.

The current treatment plan is a combined radiation and chemo-therapy regimen, scheduled as follows:
Twenty-eight (28) days of radiation, Monday thru Friday, over the next month.
(1) 2-hour treatment of the highest possible dose of a chemo drug called "Cisplatin".
Ninety-six (96) hours (4 days x 24 hours per day) of the chemo drug "Fluorouracil".

The Cisplatin was given on Tuesday afternoon, and the Fluorouracil was also started on Tuesday, in the evening around 6:00pm. Since they disconnected the Fluorouracil during the G-tube surgery that took place earlier today, (the feeding tube into the stomach), they'll make up those hours on the back-end of the treatment, which will probably mean that he will have this second chemo drug therapy running until Friday night, midnight.

As of today, Ken has not yet experienced any radiation or chemo side-effects to speak of, but we are all bracing for it. We've told him not to feel bad if he feels like he can't make it through it, because that is normal, but that he WILL make it through it, and that we're all here to support him. We're hoping that the pain he's experienced today, due to the insertion of the G-tube into the stomach, will subside by tomorrow. Meanwhile, they're giving him some very good pain medications. We're hoping he'll sleep through the night, tonight.

Inga asked him what kind of a hat he would like, if he loses all of his hair, and he told her that he wanted a "Then Came Bronson" hat. I cracked up! Remember that show, from the 70's? About this guy named Bronson who rode all over the country on his motorcycle, 'saving the day' wherever he went? Who always wore that stretchy knit hat with the double-fold on the bottom? I think that's very appropriate!

Our goal:
Per Ken's surgeon on Monday morning, after these radiation and chemo treatments are completed, they will re-check the tumor, (to see how much it has shrunk), and will also re-check the other metatastes. If he has responded well to the treatment, they may 're-stage' him. This will mean that he will be a candidate for surgery. If the surgery is performed, they will likely take the entire esophagus, and stretch the stomach up. Amazing, huh? This is what we are praying for. To fight this cancer back to where the surgery can then be performed.

This next month is a very critical time, and the entire focus is currently on Ken's treatment, and other research and paperwork associated with his medical expenses and business. The outpouring of love from his friends has been truly touching, and everyone's great enthusiasm for wanting to do things to help him has been overwhelming. He really appreciates it, and it honestly helps him. When we get past the next month and see where we are headed, it would be awesome to harness all of these great intentions and enthusiasm and do something really special for Ken. As for his own plans, he wants to go fishing and he wants a porterhouse steak! (He hasn't been able to eat any solid foods for months.) We have a picture of a Black Angus Steer wearing a sign that says "Reserved for Ken!"

To send an e-card, go to St. John's website at, and click the 'Send eCard' link on the left hand margin. the Samaritans at St. Johns will print the card and hand deliver it to his room, Room 870. In a few weeks he might be up for visitors, (it all depends on how he reacts to the chemo and radiation treatments, and how his immune system is doing), so we'll keep you posted.

Thank you, for your kind support and prayers,
Laura (Ken's sister)

1 comment:

  1. Kenny, Donna and I just found out you are in the hospital, and we are praying for you Brother. When I told you a couple of weeks ago to go on a vacation this is not anything close to what I meant. Inga if we can help in any way do not hesitate to call.