Saturday, January 30, 2010

Hello again...long time no talk to:) Thanks for checking in. I have become Ken's new drug czar. We have had great success with formula 'el Inga. We have gone all day without throwing up. We have plans written for the nurse coming on tonight and I will be calling every four hours just to make sure. Nothing is slipping by me this evening.

Other than that, we had family in from up North. Sunshine all day. Great food for dinner and from my brother in Chicago, a gourmet cupcake with a mystery filling inside. It all makes for a pretty good day. Tomorrow should go just as well, I hope. Chemo starts again on Monday. They are expecting this round to be more difficult for him to tolerate. But, with any luck, they will be wrong.....

We may be shaving his head this weekend, too. Thanks to everyone for providing such a wonderful collection of hats for him to choose from. He now owns more than I do. Which will, of course, have to be remedied shortly.

Good night everybody. I hope all is well with you. Inga
Hey all!! They've been busy the past two days with medications. All the throwing up indicates they have more work to do. So I've taken over the case. Miss Laura is going to help me keep these nurses in line and on the ball until the decision makers return on Monday.

Meanwhile, there is still talk about sending him home. We thought it was going to be last week, but the attempted change in medications which caused the flare-up in incidences of throwing up pushed it off, again. If we can get these meds right, I think he'll be better off. We'll continue to do that "wait and see" thing again.

There is really not a lot to report, but I know any update is better than no update. Thanks for everything. Inga

Wednesday, January 27, 2010

Kenny looked great this morning. He had good color and he was smiling quite a bit. The vomiting has remained under control, so mark down another good day.

His hemoglobin levels were down a little, so he received two units of blood. Which probably contributed to his color. He is beginning to feel better and there is more talk of sending him home.

That is really all for now. We have more family coming in this weekend and are looking forward to visiting, especially since he is feeling a little better.

Received a box of hats from good friend Mark S., which was an awesome gift, and gave Kenny a really good laugh! God Bless You, Mark, for being so thoughtful, even as you are struggling with your own issues. Thank you, so much!!!

Thanks again for all the good wishes. I'll try to post again soon.

Love to all-

Tuesday, January 26, 2010

Hi everyone! I hope you all enjoyed those six hours of sunshine today. I sure did. Ken had a pretty good day. He said he actually felt like getting cleaned up and going for a drive. However, an hour later he was asleep. But to actually say that today means this is the best day we have had since before Christmas. Of course the sun was shining.

Not a lot going on other than radiation, blood draws and drug administration. After having a break from radiation last week, his voice was best this morning; he sounded like himself. It seemed a little rougher this evening.

Since the nurse lady knew we liked cats, she pops her head in and asks if we would like to meet Bozo, the 170 lb. great dane!!! Totally black and looking down on me as I sit in the chair. This dog is absolutely magnificent!! I remember one from my childhood because again, I was looking up at it, and you would think that would have scarred me for life, but the calm demeanor of this dog was palpable. I pet him briefly, while backing out of the way for the dog to get to Ken. This dog knew who the patient was and knew what his job was. He allowed himself to be petted and then laid on the floor, just as comfortable as could be. Even lying on the floor, this dog was impressingly huge. Apparently, he and his owner are permanent volunteers. The longer we stay, the more we learn about this hospital. You can even have a harpist come in and play for you! Crazy, huh?

Another good thing today was his favorite nurse from the 8th floor came to visit. You may remember her from the earlier posts-Ken refers to her as "my Kara". I thought it was so sweet for her to come to visit. I almost went back to the 8th and suggest that exact thing to her, but I didn't. That just shows you what a great nurse she is. I knew leaving him in her care, I could depend on her to make sure he would have a calm, restful night, and be puke free. And the best part, Ken knew it, too. Ken admires people who strive for excellence, and she is excellent. She was of great comfort to him in a very trying part of his life. God bless "my Kara".

Goodnight, everyone!

Monday, January 25, 2010

January 24th, 2010 (Sunday) Update from Inga

Hey all! Another day of no vomiting, which makes me want to turn cartwheels down the hallway. We spent the day visiting with a few family members and our little furry friend, named Ansel. He did okay in the truck, but once we let him out into the room, he got really whiney. Meowing non-stop until we all had enough and he had to go home. It did put a smile on Ken's face for a minute, and he got to pet him a little. So it was fun, but could have gone better. Maybe next time.

No news in the health department. Radiation starts up again tomorrow.

I can't thank you all enough for all you are doing to help out around here and thank you from Ken for all the wonderful gifts he has been receiving. I have privatized the room number so anything you want to get to him, please send to the house. (The house address is the same as the shop). If you send it to the hospital, he may not get it.

I know you all are anxious to hear some news about his progress, but we're still waiting ourselves. I promise, though, as soon as I know something, I will surely pass it along. God bless you all. Love, Inga

Saturday, January 23, 2010

January 23rd, 2010 (Saturday) The Kitty gets to visit tomorrow!

Hi guys! Today went pretty well. No vomiting. Yeah! This part is soooo the hardest. Having nothing to do but wait, it feels like we're not making any progress. But back to business on Monday. We'll try to enjoy ourselves with Mike and Neal's company for what is left of the weekend.
We also get to have a furry visitor tomorrow. We have obtained special permission to bring our rotten kitty cat up to visit!!! I am so excited . He is going to be blown away. We have been joking about sneaking him up, which is probably going to be his first question. I can't wait. I hope he doesn't turn into a crazy psyco kitty. I know all kitties are capable of such things. But he travels really well, so it should be good.
I'll let you all know how it went tomorrow night. Bye for now. Love, Inga

Friday, January 22, 2010

January 22nd, 2010 (Friday) Update from Inga

Well not such a good day. More throwing up and not so much rest. He is getting impatient waiting for radiation. And I am getting impatient with his impatience.
Still no sunshine, but plenty of clouds and fog. I hope the weekend will be better. I'm sorry I don't have much news, but tomorrow is another day. Until then. Inga

Thursday, January 21, 2010

January 21st, 2010 (Thursday) Update from Inga

Well, we made it almost 24 hours without throwing up. But it was only once or twice, and not a lot of volume.He had another successful feeding, his color was better, and he smiled more today. We did some paperwork and he got a shower.

No news is good news, as far as I'm concerned. And there is not a lot to report.

Ken's brother Mike is coming in this weekend, so we're looking forward to that. I hope the weather garners some sunshine. It's been foggy and cloudy for weeks! Ken's new room should let the morning sun in pretty well. That will make the Vitamin D Nazi (Laura) happy:)

A lot of people are asking me when we will know something. The answer is a hard one. The radiation will continue to work for two weeks after it has ended. He has had twelve treatments out of 28, and they have postponed anymore until Monday. Postponements will add time to our wait. So it's really anybody's guess.

I guess that is all for now. I hope to have no news for you all tomorrow:)

January 20th, 2010 (Wednesday) Update from Inga

Hi again all. I must begin by pointing out the mistake made in the last posting. Four out of eight laps around the hospital equals 1/2 mile. Not a quarter mile. Durrrr. Thank you Selvaggio's for pointing out my error. You win the big prize!!! I don't know what that is yet, but you guys win it.

Ken was having a bit of pain this morning from his surgery sight. We are checking into that. He has a sore throat that we have been following for a few days now. Doc says it could be from the radiation, so he has postponed any remaining treatments for this week. Ken of course doesn't like a day where he doesn't feel he has accomplished something. He wants to keep plowing ahead, God love him. He has had a little relief from the vomiting. This evening was puke-free. He slept a little while I was up there tonight. I never thought hearing him snore would make me smile. But smile I did.

He got a new room today. So much nicer than the one he was in. First off, it's a private room, so no chance of a neighbor. Wood laminate floors, bigger bathroom with his own shower, two sinks, one in the room, one in the bathroom. I was much more impressed with the staff, too. But all that moving made him kind of tired, so he took his nine o'clock drugs about a half hour early and is now hopefully sleeping soundly.

Thanks again to all of you for your well-wishes and offerings of service. I wish I had more for you to do.
But for now, prayer is all I ask of you. And yes, I know, I don't even have to ask. Love you all. Inga

Monday, January 18, 2010

January 18th, 2010 (Monday) Update from Inga

Well, we finally got a good day. Ken has had two successful feedings, (the j-tube feeding that runs all night), and a good night's sleep. So his spirits were much better today. Tomorrow should be even better.

Not only did he have a tube feeding, but he also had a chocolate milk, a little bit of mashed potatoes and gravy, and a touch of ice cream for dessert!! They are using a Dramamine patch, not for motion sickness, but for its side effect of dry mouth. This decreases the saliva build-up in his throat, which thus decreases the gag-reflux throwing-up that he has been suffering with for months. In fact, this has decreased dramatically over the past 36 hours. That little half inch patch, placed behind his ear, allows him to actually eat a little bit, and keep it down. We also broke our hospital ward lap record. We walked FOUR laps around the hospital. The nurses are now telling us 8 laps is a mile, not 9. So, we did a quarter mile- how's that for progress?

Ken's sister Gina was here this weekend with her family. The kids brought their doctor's bags, but were unable to assess the patient. Ken wasn't up to having little visitors, but was deeply moved by eight year-old Halle's hand-made card. She had the wonderful intuition of writing a card full of jokes, such as "Why is Rudolph's nose red?"-"Because Vixen punched him." Brilliant. Thank you, Halle, for being so sweet.

And, thanks again, to all of you for your kind words and prayers. I think they are working. Today was a good day! Good day. ahhh... good night. Inga

Saturday, January 16, 2010

January 16th, 2010 (Saturday) Update from Inga

Okay! I think we may finally be on track with this stupid feeding tube. He is supposed to start receiving food this evening, and it should run until tomorrow morning. I don't want to get my hopes up, but I think we're good.... I think.... I hope.... Good.... Okay. Honestly, they should have just given Kenny the tools and let him fix it himself. Not only would he have fixed it faster, but he would probably have re-fit and re-engineered the whole system until the original design was improved. But that's just the way he rolls....

Ken hasn't requested pain killers for two days, now. The actual surgery site of the feeding tube 'installation' is healing nicely. His head is clearer, and he was much more talkative today. Still grumpy, but more talkative. One thing he expressed strongly today was his wish for no visitors. He expressed his understanding that so many people are desperately wanting to help, but he reiterated that, for right now, he wants to be left alone. There is nothing anyone can do, at this point. It pains me to say it, but even close family are being turned away at times. So show him your love by honoring his wishes. That will make him happy. And, hang on to those good intentions, because somewhere, sometime soon, down the road, there will be opportunities for all to help.

I told him to 'eat good' tonight, and get some sleep, because tomorrow, he is taking me for a walk! Time for me to rest up, too. Goodnight everyone. God bless. -Inga

January 15th, 2010 (Friday) Update from Inga

Hey all. Not much to report on, other then they still haven't figured out his feeding tube yet. They tried to start his feeding tonight, but the machine said it wasn't flowing. So back to dealing with this issue-AGAIN.

We can expect a pretty quiet weekend, seeing as how doctors don't work on the weekend. Hopefully it will be uneventful and comfortable for Ken. Poor guy is still throwing up. Well, dry heaves, anyway.

Sorry I don't have much for you tonight, maybe tomorrow. Love Inga

Thursday, January 14, 2010

January 14th, 2010 (Thursday) Update from Inga

Hello all. A few things to report...Ken had his feeding tube altered again today. They replaced his thingymabob with a whatchmagig in hopes that it stop leaking. They were starting his feeding just as I was leaving, so we'll see tomorrow if it works.

He got a little mixed drink through his port tonight and he slept for 2 1/2 hours! All you bikers will like to know, he is still solving all your problems even as he fights cancer in the hospital. As he was sleeping he mumbles "check the point cover, it's just two screws.", "Tires, what size?" I was cracking up.

He didn't feel like making out bills, he didn't feel like taking a walk. We'll try again tomorrow. Bye for now.-Inga

Wednesday, January 13, 2010

January 13th, 2010 (Wednesday) Update from Inga

Hello to all. Some of you are just finding out and are visiting this site for the first time. Thanks for checking in. I know it is hard on each and every one of you. It is a lot to take in. But the comment I am hearing from most all of you is that you never new him to be sick. Ever. That is what we are counting on to get him through. He is a very healthy guy otherwise. Let's just hope he doesn't try to fix himself......

Awhile back, three or four years maybe, Ken was having a problem with his shoulder. He couldn't raise his arm above his head. It was too stiff. About the time he couldn't get his coat on by himself and I was nagging him to death to go to the doctor, he was underway with a project which included re-wiring a light switch. He warns me ahead of time" I'm going to do this hot". Great... I am in the other room when he yells for me. I race in and he is standing there with his arm out-stretched and a dumb look on his face. "Are you alright?" I asked. He says "I've never had that happen before. It shocked me but only in my shoulder. My shoulder doesn't hurt!" I grabbed his coat and made him put it on. No problem! He cured himself.

Then a year or so later his wrist was getting stiff. He had a hard time playing guitar, and it seemed to be getting worse. Until one day he was out shoveling the driveway (one of his favorite pastimes) and slipped, landing directly on his wrists and forearms. And of course HIS WRIST HURT NO MORE!! Who needs doctors when you can fix yourself?

He is going to need a lot of strength in order to fix himself this time. But we have all the faith in the world that that is exactly what he is going to do.

Not a lot of new info. They are still trying to get his feeding tube squared away. I'll know more tomorrow.

Ken's sister Gina is coming this weekend and we are looking forward to seeing her and her family. It will be nice to see the kids and take a break from the mundane cancer discussions and talk about things that are really important like Hannah Montana and Transformers.

Thanks for checking in. Until next time. Inga

Tuesday, January 12, 2010


Hi folks,

Here's a good link about the esophagectomy surgery that might be in Ken's future. It's a very general overview, but you'll get the picture. Or, go to Google, click on the 'Videos' link, (little blue link at the top left side of the Google main page), and then type in 'Esophagectomy' in the search box. You'll find that there are many videos of esophagus surgeries available. Such a surgery is every bit as complex and risky as open heart surgery. Also, from what I've read, the recovery period is much more complicated and risky, as well. The esophagus sits on top of the spine and below the trachea, so getting to it, and avoiding injury to anything adjacent, is pretty tricky.

Esophageal cancer is such a killer because, by the time symptoms are significant enough to be noticed, and to warrant a doctor's visit, the disease has progressed quite far along, Stage III or Stage IV. As one of Ken's doctors explained it to me, if esophageal cancer is found early enough to be staged as either Stage I or Stage II, it was likely found by accident, while treating some other issue or condition.

Curiously, and without explanation, the incidence of esophageal cancer has been increasing. I honestly wonder, ....why? And, if it's such a killer, with symptoms so insignificant and/or unrecognizable, why aren't early screening protocols in place?

You have all been so kind and concerned. Ken is so lucky to have so many wonderful people in his life. It's really true. Bikers know how to love life. And, they value the lives of their friends. Your friendship, your cards and calls, and your prayers are all showing Ken, everyday, that he is loved.

There are 18 more days of radiation treatments ahead, and then a wait of about two weeks, for the full effects of the radiation to be manifested. After that, they'll check on the size of the tumor and the extent of the other metastases, (if any remains), and see if he's ready for surgery. They might do another round of chemo, too, and then do the surgery. Though this cancer will always be in his body, I would feel much better if the source of the cancer was removed, so I'm currently hoping for the surgery.

With love and gratitude,
(Ken's sister)

January 12th, 2010 (Tuesday) Update from Inga

Good evening, all. Today, I am the sick one. I saw Ken this morning, but ended up leaving work early because I am coming down with a cold. So, I did not see him for the rest of the day. No worries, I washed my hands and was wearing a mask when I saw him this morning. His mom was able to get up to see him, so he did have a visitor today, which seems to matter to all of us more than it does to him. We have talked on the phone a few times. He says he is fine. Although, his feeding tube was leaking a little, earlier today, but it's supposedly fixed, now. Not a harmful situation, just a nuisance.

Other than that, no news is good news, if you ask me. It's a welcome relief. So many days prior, in the first week that Ken was in the hospital, I almost didn't want to go up, for fear of more bad news.

Keep those cards coming, it makes the bills in the mail a little easier to take. Thanks so much for all the kind words. And, to all who want to see him, please understand how much safer it is for him to be left alone for now. He'll be talking our ears off again real soon. Love you all so much. -Inga

Monday, January 11, 2010

January 11th, 2010 (Monday night) Update from Inga

Hello all! Ken's stomach had not been moving the liquid food that was coming in via the G-tube that was 'installed' last Wednesday, (an external tube that goes directly into the stomach), so they placed a tube inside of that G-tube, and extended it past his stomach and into his intestine. He said he didn't even feel it, so that's good.

They are talking of sending him home. I'm not sure when yet, but they seem to be leaning that way. He had me pack up all his extra stuff just in case it is soon. He will return home but have to go every day to receive radiation. His chemo is finished for now, but he may have another in six weeks or so. He has really tolerated it well, so far. Hopefully that will continue.

We still have to keep the visitors to a minimum, even if he's at home. He is still in a very dangerous place in his treatment.

I think the days ahead are going to be a lot of wait and see. We'll keep you posted.

Love to all,

January 11th, 2010 (Monday) Update from Laura

Hi all,

Just a quick update, to let you all know that Ken spent most of the weekend dealing with the pain of the G-tube, (the external feeding tube directly into the stomach), and the beginnings of the nausea caused by the chemo. So, overall, it was not a very fun weekend for him, and he was 'out of it', for most of it. Ken's brother and his wife, their son (Ken's nephew) and his wife, came to visit for the weekend. His brother bought him a dozen or more Western movie DVDs, which are Ken's favorite. The hospital provides a TV with a DVD player, which is shared across the ward, so that's nice.

Today, Monday, they have given up on the G-tube into the stomach, as the food is not moving into the intestine as it should, (which is the normal digestive process, but sometimes narcotics can cause what is called 'gastroparesis', and the stomach won't contract as it should, and move the food on into the intestine), so they are taking Ken into surgery to insert a tube into the G-tube and run it further along into the intestine, directly. This is supposedly a less invasive surgery, so it shouldn't take as long as the first one. Ken has gained seven pounds since he went into the hospital, and they want to keep this going. Good nutrition is important for his immune system, his physical strength and his overall frame of mind.

That's all, for now. I'm sure Inga will have more for us, this evening.

Thank you, so much, for caring,

Laura (Ken's sister)

Saturday, January 9, 2010

January 9th, 2010 (Saturday night) Update from Inga

What a good day! We made some much needed progress on complicated and vexing financial matters, and the worry and pressure has been somewhat alleviated. Another awesome tidbit is that the nurse said that his particular chemo cocktail, (Fluorouracil, otherwise known as 5-FU), is very well tolerated by most patients, so his side-effects may be minimal. The first chemo drug, Cisplatin, (at the 'high-octane' dose), that Ken received on Tuesday, might also still have some side-effects, but hopefully not. He will still have a deteriorating esophagus, from the radiation, (which has already started), but maybe not the hell that follows chemo. So keep your fingers (and toes) crossed that this is how it will go for him.

Thank you, thank you, thank you, to all who have helped out this week. It's like being Queen. Give an order and watch it be executed. I could really get used to it.The generosity has been unreal. I want you all to know how much it is appreciated. "Thank you" never seems to cover it, but it will have to do.

Weekends are usually pretty uneventful around the hospital, so that is all there is to report, for tonight. Ken is okay, got some good drugs in him, and we're trying new food through his G-tube tonight, for the other wasn't going down so well. There is a lot of "wait and see". So, that is what we are doing. Waiting and seeing. Excuse my French, but it really sucks. But, tomorrow is another day. Until then......I love you all. -Inga

Friday, January 8, 2010

January 8th, 2010 (Friday night) Update from Inga

Hi all. Not much to report tonight. Ken wrote out some bills while I tried to read. He didn't feel much like walking. We were able to get a movie cart, though. So after taking care of all the daily business, we watched one of our favorite dumb movies "Joe vs. the Volcano".

He was a little grumpy, or maybe that was me. Looks like they may try to send him home next week sometime, if everything goes to plan. Seems a little scary seeing as how the side-effects of the chemo are most likely right around the corner. It should be safer for him, though, considering the hospital is crawling with germs and disease. He may also be able to get some sleep, which is always good.

I would imagine the weekend is going to be pretty quiet. But I'll be checking in anyway. Talk to y'all then. Love always-Inga

Thursday, January 7, 2010

January 7th, 2010 (Thursday night) Update from Inga

Hello Kenny Grman fans. I am happy to report that we made three laps around the floor tonight. 1/3 of a mile!

Had a little miscommunication with the nurses this morning, and Ken was without his pain meds for about seven hours. He has to ask for them!!!! He thought they were taking care of it. Poor guy. :( We got a schedule going and they are supposed to stay on it. I'll be checking in tomorrow morning. His Kara is there tonight so he should be able to sleep at least. She takes great care of him. God bless her.

He had a bad case of hiccups which was quite painful for awhile. Then a "hospitalist" came in and said they were going to send him home tomorrow!!!! Obviously he didn't look at Ken's chart to see that he was still ON CHEMO!!!! (Duh.) I may have to fire another doctor. He had Ken quite upset.

I know so many of you have a very strong desire to see him, but even his close family is holding back from visiting. It is just too risky. When he is better you can all come to see him at his shop, the way it should be.

Thanks so much for checking in, and we'll talk again tomorrow night. Love you all. Inga

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)

January 6th, 2010 (Wednesday night) Update from Inga

Hi all! Ken got his feeding tube today. He was in surgery for two hours! The pain was quite intense post-surgery and he has begun pain medication. Pray that he can get some sleep.

There was no radiation today, but the chemo is continuing until Friday night. No food today, but he will start his tube feeding tonight. Keep your fingers crossed that all goes well. His favorite nurse Kara is on duty tonight. He calls her "my Kara". So I feel better that she will be there. He is always comforted by "his Kara".

Thank you all for the well-wishes. It's so nice to hear from you all. It helps to focus on something other than chemo and radiation side-effects.

I'll have more for you tomorrow. Lots of love. -Inga

Monday, January 4, 2010

January 4th, 2010 (Monday night), Update from Inga

Guten Abend! I hope you all are well. We're a little better today. Ken actually got to eat lunch today. Some tomato soup and of course chocolate milk for dessert.

Our dear sweet Miss Laura is here grilling those doctors. We found out today from the 2 1/2 hour MRI that the tumor HAS NOT infiltrated the trachea! This is really great news. They are talking about a really strong chemo administered once or maybe twice over the next 4-6 weeks. Radiation 5 days a week. Then hopefully surgery shortly thereafter. This next month is going to be intense.

Due to the fact that Ken's immune system is about to drop out from underneath him, please no visitors. I know it's hard not to see him, but the exposure to all who love you can sometimes give you a cold, and even a cold is serious business in the oncology ward. Drop a line in the mail, send flowers or send e-cards from St. John's website home page. (, room 870.) He loves to hear from you all. We love hearing from you, too, so continue to call the family.

Love from Inga

Saturday, January 2, 2010

January 2nd, 2010 (Saturday) Update from Inga

Not much new today. Lots of visitors... brother Mike, nephew Neal, sister Gina, uncle Nelson, aunt Elaine, and good friends Dave and Tommy from St. Louis. He handled it all pretty well. Dave said he looked a lot better than he had imagined.

Not a lot of food today. Had a hard time keeping anything down. We did take a walk around the floor. Nine times around is a mile. So we did 2/9 of a mile.

No test results, no new orders. Short one tonight. Yay for me. Love to all. Tomorrow.......Inga

January 1st, 2010 (Friday evening) Update from Inga

Hey all. Not much happened today. No new orders from the doctors. Hopefully he is getting some sleep.

I walked in and got settled. Marcy, Gene, and Deb were visiting. I told him I brought some chicken soup and some tea and that Marcy had brought a frosty, so he had a whole menu to choose from and he says "no tomato soup?" If he wasn't already in a hospital bed I would have put him in one.

So later of course, I brought tomato. He gave it a good go, but didn't eat as much as I had hoped. He did have some tea, and I talked to him late tonight and he said he had a whole chocolate milk, and it went down pretty good. So on top of his TPN he is eating better than he ever has in his whole entire life. lol

That's all folks. LOVE to all. Inga

Friday, January 1, 2010

January 1st, 2010: Update from Inga about last night

Well I can see why he doesn't want visitors. Last night was anything but restful. Nurses coming in every few hours for vitals, plus bathroom breaks-I bet he was up six times between midnight and six. So was I. I had to come home and take a nap.

His MRI took 2 1/2 hours. Normal MRI's usually run 1/2 hour. Poor guy, he was kind of upset when he got out. Our favorite nurse Sherry took him the rest of the way to his room and got him set up. Then came and gave him a hug before she left to go home and called him "her special patient." That made him feel good.

We had dinner. Ken had tomato soup and for dessert, chocolate milk. He ate it pretty fast, I was surprised. I shouldn't be, he hasn't eaten since Sunday morning. He thanked me and said it was good. So I think he enjoyed it.

Then we watched a movie and got to see the fireworks outside of our window. We toasted our water in our champagne glasses and tried to sleep.

I don't see alot happening today, because of the holiday. But I'll post tonight if there is. -Inga

The importance of optimism!

Thank you, so much, to everyone who is sending us their best wishes, love and prayers for Ken. It means everything, and we are truly grateful.

If ever there was an opportunity to put the power of optimism to good use, I think that now would be the time. I have spent the entire evening researching Stage IV esophageal cancer survivor stories, and have found so many! The most common thing among these stories was how the survivors stressed the importance of staying optimistic and putting full focus on their battle. I am so much a believer in this, and how it can make the critical difference. This is what I desperately want for Ken, that he find his optimism, too.

I strongly believe that there are many reasons to be optimistic for Ken! Let me explain...

Here's what I know to be facts:
1.) Ken has not been properly nourishing his body or receiving the necessary vitamins and minerals that a body needs for decades. We all know the peculiarities of his diet, and the narrow range of his menu. Most relevant has been the severe absence of fruits and vegetables from his diet. This is a major risk factor for the development of esophageal cancer.
2.) Ken has been a smoker for decades, a major risk factor.
3.) Ken has suffered from chronic acid reflux for decades, which causes Barrett's Esophagus, which leads to adenocarcinoma, which is the type of esophageal cancer that Ken has developed.
4.) Ken has not been able to eat anything of any significance for months, (four months, at least), and he has lost a dangerous percentage of his body weight. He hasn't been able to eat anything, for the last month. He is running on absolute empty. His immune system is likely worn down to nothing.

But here's why I think this can be turned around:

1. Ken has been started on TPN feeding, (see previous posting), and next week, will have a tube inserted for even higher quality nutritional meals. For the first time in months, his body will be fed, and his immune system can begin to rebuild. He's had nothing to fight with for way too long, but now he'll have some nutritional ammo. Importantly, a range of vitamins that his body has been long deprived of will be instituted into his diet. Everybody knows how critical the vitamins are to the immune system and bone health.

2. Ken has stopped smoking. His body will no longer be attacked and further damaged by the tar, nicotine and other toxins that cigarettes provide. His immune system can focus entirely on healing the existing damage.

3. The radiation treatments have begun, and they will be starting the chemo next week. The existing tumor and the other metastatic bone cancer will be significantly shrunk, if not totally destroyed, by these treatments.

With these things in action, there is no limit as to how far Ken can bounce back. I firmly believe this!

A prognosis is only a best-guess predictor based on a relative pool of assimilated data that is wrought with sliding catalysts and infinite variations in the genetics and will of the members contained in that pool. However, if anyone stands apart from the general crowd, it's Kenny. I refuse to hear "the prognosis is poor". What I hear is "the challenge is great". Still, if anyone can rise to a challenge and beat the odds, and do what most cannot do, I know it's Kenny. If there were anyone in the world who didn't belong in a pool of average statistics, it's Ken! Right? Right.

Kenny has 28 days of radiation and chemo treatments ahead of him, and he'll need all the strength he can muster, from within himself and from all of us, through encouraging notes and cards, and our kind best wishes and precious prayers. Love is such a powerful force, and he is so loved. It can truly make the difference.

Of all the things that make us human, and that demonstrate our ability to shape our own world for the better, optimism is the greatest force of all. Optimism, however, cannot be administered through a feeding tube. It must come from the heart and spirit of a person. Amazingly, it is an attitude that can be transferred from one person to another. I want Kenny to receive all of the optimistic hope and energy that we can possibly provide to him, and that he can possibly hold, to help him find his own optimism and hope. He needs this. This is how we can truly help him.

Thank you, again, so, so much. We love you all.


Here are a few of the many Stage IV esophageal cancer survivor stories:

Cathy's EC Cafe:

Yale Cancer Center:

Mark Wolgram: (This is a very well done story that takes you through his diagnosis, surgery, chemo and radiation, and afterward...)