Karen's Page

Welcome to Karen's Page, a web page intended to keep Karen's family and friends informed about her cancer. Karen, age 40, has a rare form of cancer called Pseudomyxoma Peritonei. She and her husband Tom have 2 children ages 4 and 7.

Wednesday, November 30, 2005

wednesday evening

Karen has had a much better day today. Yesterday she had a lot of back pain and nausea. She slept well last night due to better pain management and the nurses getting to her faster with the drugs! We have found that she does best with the pain pills at the same time as the zofran and those coming exactly 4 hours apart. She is so much happier when she's not in pain (imagine that!)

She is very excited that Tom is coming tonight! Yesterday we washed her hair, today she got all washed up. Her energy is great and she walked around the track a record 4 times at one time today. She was planning to go firther but realized she wanted to save her energy for her bath! Last night she set a personal record for speed around the track. She was really moving! This morning one of the ladies at the desk said that we looked exactly alike! I said "You should see her twin!" I think it was the bed head and sleepy eyes that they noticed!

The doctor's have decided to send her home with the TPN, the food bag. They plan on having her use it at night. This will let her eat at her own pace and not be too stressed about food.

We were lying in wait this morning for the rounds and didn't let them get the best of us! We got to ask a few questions and that resulted in some muscle relaxants for her back. We're hoping they help.

She enjoys your letters, we can't seem to open your photos but appreciate all of the thoughts.

Captain Underwear seems to be training at off times, I have seen him once, and heard him another time. We don't know what his health issues are but are hoping that he is well soon too! Too friends that we've met are checking out tomorrow. I bet Karen will be following them soon!

Tuesday, November 29, 2005

Tuesday afternoon

Tuesday afternoon

Karen is sleeping as I write this, looking pretty peaceful in her bed. She had a rough morning with pain and nausea. She us having a lot of lower back pain due to being in bed and sedentary for so many hours. She has had the lower back pain on and off but the pain pump and the other pain meds kept in check. Now that she is just getting her pills every four hours she has a bit more pain. Few of the nurses just bring it to her on schedule they usually wait for her to ask and during the night she sleeps through a request time and then she wakes up in pain. She is also trying to take it after eating a bite of something because it also can make her nauseated. She waited just a bit too long this a.m. and was really miserable. By 10:30 we had her back up ad running, pain meds, nausea meds, a small bite of food and she was ready to head to the track. We heard Captain Underwear just once today and don’t know if he is still here or not. Maybe he was scared off by her training sessions. She made it around the track 3 times in two training sessions today. She had a warm up lap while the pain was intense and decided she needed to wait and try later.

The doctors are not surprised by her lower back complaint and said it was pretty common. They alternate between telling her that she should listen to her body about eating and then discussing how they can get her to eat. It’s a bit confusing to know how important this really is to them. The whole doctors on rounds thing is such a joke. They appear at her bedside in the early morning just when she’s sleeping soundly, turn on a bright light over her head and ask her questions. It seems like a torture scene and I believe that our country is having arguments about torture techniques at this time. (since I’m in the city I’m thinking about calling John McCain) She has no time to formulate a thought or question based on the little information they provide, let alone the time to articulate it before they say goodbye. I have run after them a time or two (glad I am sleeping in sweats) to ask questions that we wrote down ahead of time. I would like to propose a two minute warning on those visits, if they came in and said “the doctors are coming the doctors are coming” at least we’d be able to adjust to the lights! If there are doctors out there reading this I don’t mean to offend you but a little courtesy seems to be in order.

We had her sit in the shower today with her back to the hand held sprayer. She tipped her head back and we washed her hair. She looks great! Clean hair really cheers her up. She can’t shower yet due to the tubes and all of the sutures but she can get pretty clean. She also blew it dry by herself.

Thanks for the prayers for her back and her appetite, she ate a little vegetable soup and a few bites of pudding for lunch. I was really encouraged that the soup tasted good to her. They have her on an appetite stimulant that tastes horrible to her. She drank it in one gulp and we were pleased that she didn’t gag. They really don’t want her to vomit and are always cautioning her about what to do if it actually happens. We are really happy to report that she hasn’t had that occur.

Dr. Yoo, her medical oncologist came in last night and launched into a rather interesting dialog about animals that don’t have gall bladders. It seems that elephants (who don’t have gall bladders) live longer than animals who do. I think this was in response to Karen’s question about digestion now that she doesn’t have one! He also said that she should avoid greasy food for a while and that her body will adjust! She wants to take him home to CA with her and I can see why. He asks about her and really cares.

Tom gets here tomorrow night and I know she is excited. When I read the date on the calendar she said “It’s Toms birthday” HAPPY BIRTHDAY TOM! Welcome to the over 40 club, it’s about time you catch up with the rest of us! We’re thinking about you.

Returning to the Front!

All right all right all right all right! I have had a great time being home with the boys, Joyce and Al, and everyone in the 'hood but now it is time for the big mission. The mother of all retrievals. Perhaps one of the longest ( and I know that Frankfurt, Germany is the topper in my book) distances traveled for a date. The ultimate line for the old party question, "...so where is Karen tonight?" " Why, I think I left her in our Nation's Capital!".

Ayup, it's time to go and git 'er. Back to the ranch, ya'll. (or all y'all)

Tomorrow morning I am wheels up at 7:48, stuffed into coach for a trip back to DC. If I am lucky, they will entrust me with the lives of the passengers and allow me to sit in the emergency rows, but I think that my name may still be blacklisted from that last incident where I attempted to practice removing the hatch before flight. Certainly, I mused, I must pe prepared for that rapid but bumpy landing from 40,000 feet that will leave the hatch in good enough shape to actually remove and chuck, yes? Apprently not. My 4 yard hatch chuck onto the wing and subsequent union baggage handler cost us 6 hours of maintenance delay plus a lovely debriefing with the Homeland Security party staff. Dude, I'm just doing my part for national security. Anyway, I will not practice. I will not practice . . . .

Talked to Karen this morning and she is sounding more and more like herself. This is evidenced by her explanation to me that the reason she is having heartburn and nausea is that the medication needs food in the system to reduce said nausea and that she is not eating more than 10 bites per day. Taking an especially passive tone I replied that, " gee, it sounds like you have the answer right there, huh? Need to eat more food and let that acid and stuff get soaked up."

" Tom, I KNOW THAT!" came the oh-so-prompt reply. "It's not like I don't want to eat. I need to talk to the doctors and find out what can be done about the nausea and heartburn."

"Um, I think - and correct me if I am wrong - that you said that more food in your belly will set things right . . . .right?"

" Yes, but I have no appetite! I don't feel like eating. If I could just get rid of the nausea and the heartburn things would be great." (Unsaid retort: "never stopped me!")

" All right then . . . .wanna talk to your mom?"

So as I return to DC with the mission to bring her home the first step is going to be to get her to eat, which she apparently is not yet keen to do. I will persevere, however, and because of that we may come home divorced. Grounds: " Your honor, I must cite culinary cruelty as the cause of this dissolution. He would simply not stop trying to feed me. Every minute he want's me to eat. Cakes! Shakes! Juice! IceCream! All the time with the food food food! He's an animal! He can't let it go! I can't live with him another min- NO TOM! I do not want a fritter!"

Not pretty. But, I have a job to do and I am up to the task. Feed the mrs, and fetch her home directly.

Stay tuned. . . . it may not be pretty.

El Bloggo.


P.S. Pie? Schnitzengruben? (just warming up)

Last night

Karen had back pain last night and had trouble sleeping. Her back spasms are from prolonged sitting and bed rest. Please pray for relief from back pain and increased appetite.

Monday, November 28, 2005

Monday evening!

I confirm (happily) that the previous blogs contain accurate information! All that remains on Karen's torso is a small white bandage, lots of sticky tape residue and quite a few sutures! She is thrilled by her new walking ability and walked two laps this afternoon around the race track! she had been confined to the speedway but is now doing full circles on the track getting ready for the Indy or a race with Captain Underpants! He has recently been moved to a room closer to ours and I think it's a ploy to psych her out, it's not working! she's ready to train seriously now.

The telemetry was removed earlier and that was great but the JP grenades are the best to go! We are now in the Stamina training phase of recovery and the spnge baths from the nurses are over and we were left to our own devices with a wash cloth and towels. No shower yet but she smelled pretty clean by the time we were finished! The whole process of drain removal, walking and bathing was exhausting and she slept a bit before undertaking the track!

We were told by this evenings nurse that she will be removing the pain pump tonight. As I tucked Karen in before I came to blog she gave it a fond pump and said "I'm gonna miss you buddy!" I think she will but she has used it less and less over the day. She is getting her pain med at the same time as the anti-nausea medicine and that has really helped her today. Her spirits have been good since she hasn't felt so nauseous.

Our biggest goal now is to find something to eat. she ate a few bites of soup and a bit of apple pie today for lunch. Nurse Mindy told her she couldn't get her pain meds without food as that adds to her nausea.
I am really encouraged by her attitude and she was talking about what to wear on the plane and how to get out of bed at home... all signs that she's more ready.

She enjoys listening to your notes and loved the photo album that she received today from Snapfish (Mike?) We both had fun looking at it! It included Kepke family vacation pics from the last 4 or more years, very cool! Thanks for your thoughts!

We'll keep you posted on things! I imagine she'll be tube free completely very soon! Your prayers are really helping and we appreciate them!

Say Goodbye to JP

Today Karen’s JP tubes were removed! Her telemetry is also gone. This will make walking easier as she no longer has to tape the tubes down. Now that she is unencumbered her lap times will decrease; the floor lap record may fall. Watch out Captain Underwear! Her remaining PICC line administers medication and food. Today she’ll get an appetite stimulant. Please continue to pray for relief from nausea and for her appetite to return.

This Just In! Karen is Tube-Free! (but not PICCless)

This is a breaking news Blog . . . Washington (GN) We just got off of the phone with the patient herself who reports that this morning some mysterious men in white, armed with sterile surgical kits, forced their way into her room and demanded ...... Three JP Drains. Not just one. Not Four, but three. three was the number, and the number was three. They then used the Holy Scalpel to remove the sutures and whisked the drains out. Was there pain? Yea, verily there was. Was there much rejoicing? Yea, rejoicing was abundant.

Karen sounds happy, almost giddy about this and has planned her day to pursue Captain Underwear with a vengeance. Her main tasks now consist of eating more and more, walking, and sitting. It has now been mentioned that she may be parolled this weekend and I was quite pleased to note that there was not a hint of terror or serious trepidation in her voice. So now it is down to pain control and food. She is mobile!!!!!

I know that Ann will be posting a more accurate Blog account but I wanted to post my excitement at the news . . .hot off the press!!!

Sunday, November 27, 2005

sunday evening

Sorry blog readers! As a previous blog addict I know how late this posting is...I checked all the time before my arrival here! I couldn't get here sooner as Karen has been very awake all day and she likes company most of the time. She and I agreed that I needed to head over to blog though as it has been an eventful day.

Early this morning Karen's bowels started working, this happened right around the Doctor's rounds and the nurse was so impressed that the big event finally happened that she felt the need to show him!! Karen and I were a bit surprised by that but I guess there are steps in a patient's life that everyone cares about!

Karen had a breakfast of oatmeal and the doctor had told her that to go home she needs to eat 2/3 of her tray that they bring her so she did! Fortunately there was only oatmeal on the tray at that meal! She has not accomplished that feat with any other meal and I don't see it happening as the smell of most things put her off right away. She is able to eat anything she'd like to try that is soft so Uncle Bob and Ginny brough over pudding, jello, noodles and butter, all things that sound edible to her.
She had nausea almost all day and didn't feel well until late this afternoon after her second walk. She felt so much better after that walk that she took another and made it farther than ever! Yeah! She's training to beat this man who runs the halls pushing his IV. He books up and down the hall with this look of glee as he passes. I have named him Captain Underwear as he wears his outer gown as a cape and it sort of flies out behind him as he goes, hence the underwear sighting. I think he's a superhero in disguise!

The lasso (oxygen tube) has been out for a day and today they removed one of the JP tubes. It hurt a lot as it was sort of embedded in the skin and the Dr. had to do a bit of cutting. Karen was tough! He said they'd probably be removing the others soon! Thanks for the prayers and keep them coming! She still gets the killer heparin shots and has to wear the "Leg Irons" the cuffs around her legs to prevent blod clots. The velcro is wearing out and occasionally they pop off as they expand.

She is sleeping better and her biggest problem right now is the nausea. Please pray for that to pass. She gets a bit stressed when they talk about going home and she said she's worried about nausea on the flight and just the length. I am sure that she'll get more comfortable with the idea when Tom is here.

I know she is missing everyone and looking forward to her reunion with her boys.

Saturday, November 26, 2005

Saturday afternoon

Karen has had a very sleepy day! she said goobye to Kathryn early in the morning, drowsed over a small bit of oatmeal and slept for 2 and 1/2 hours. After her sleep we walked up and down the hall and up and down the hall again! She made it to the nurses station and back once and to the first doors the second time! She has snoozed a lot since with a short time awake over a bite of mashed potatoes and a few peaches. We watched an episode of "What not to wear" and I decided to shoot secret footage of her in her hospital gown for future use! What with the non slip hospital socks it will make some great footage on TLC!
There has been no change in medication today and she had the last of her antibiotics this morning. They are keeping her on the food IV and will talk about a change on Monday. they are encouraging her to eat anything soft she might want to try. My job is to scope out the cafeteria for something that might appeal to her that is edible! She mentioned ice cream but isn't yet sure. The nurse today reminded her that she will just have to try things and some will work and some won't at all. Pray for her a few foods that she might like to come along, so far only oatmeal.
She gets irritated because she wakes up having to go to the bathroom all of the time. she hates to have her sleep wrecked! It's good that her kidneys are functioning so well.
Keep praying for her strength, she's working hard at being more independent! Please pray for my hands! My excema is not liking the dry hospital and all of the hand washing! It seems a silly request what with all Karen is going through but I'd still covet your prayers.

Friday, November 25, 2005

email for Karen

With Kathryn heading home you may send email to Karen at love4karen@comcast.net
ann will be picking up email at this address for her.

Here's my last blog entry from Washington DC titled "not a perfect angel but close!"

On my last day with Karen I have so many mixed emotions. I, like Tom, want to stay and see the progress. I want to be home and sleep in my bed. I want to stay here and get Karen through any potential tough times in the oncoming days. I want to see Mike and the kids and my dog. I want to stay with Ann and help her out.

I sound like an angel on the web, so I thought I would tell what I was not good at while I was here.
-my ice chips delivery was less than desired (especially at night). I always got the right amount, but I frequently missed her mouth and had to search for “stray chips” amongst the tubes and blankets and gowns. I improved. Unfortunately when I missed and the chip landed smack dab in the middle of “the girls” we had one of our giggle fits – Karen started laughing first!!
- I have knocked off two inhaler exercise (air bongs) machines off of their perches. The first one broke, the second one the mouth piece hit the floor and I was grossed out by that and she was still under neutropenic precautions.
- The lasso incident has already been reported
- I talk for Karen too much. I have improved in that area – really!
- I have trouble moving the side arms of the bed. I swear they are against me!
- I can’t turn off the pulse/ox machine very well. I have no idea why.

Well all of these are very small details that Karen gets a kick out of. I am very confident that Ann will do well in my place. She will get Karen going and be a great encourager and cheerleader. She is used to coaching, and teaching. These traits will serve Karen well. Karen is nervous that Ann is here...

Keep Karen' s spirit up. Let her know what is happening in your lives. Thanks for your notes.


Friday night 11/25

Karen Update:

Last night was a good night. After a midnight blood draw and ½ of ½ a dose of benedryl she was asleep until morning with periodic wakefulness that did not last long. A lot of coughing last night – all good. Pain was managed well. Not very much gas or lower back pain. Ann said she got more sleep than she does at home. I don’t know if I believe her or not!
Fever reached 101, but Tylenol did the trick.

Karen is beginning to have hot flashes again. I guess this will be something that will be with her for a long while. Darn, but at least it doesn’t involve pain.

After visiting with Dr. and all here is the scoop.
New pain management is:
Percocet is her new baseline pain medication. It is in oral form. This is something she can go home with. Her extra pain med is the button push of Dillodin. She will receiver her first percocet at lunch. The goal is to wean her off of Dillodin.

Bone marrow is responding very well to treatment. They will stop the antibiotics slowly – two at a time. Two today and then two tomorrow.
A stool softner has been ordered. Should receive it at lunch time.

Dr Yoo stopped by again. We really like him! He explained what happen on Tuesday with the fever and all. Karen’s white blood cells were climbing through the weekend and on Monday as expected. They stopped the neuprogen as was protocol on Tuesday morning. It turns out that Dr Yoo thinks that during the surgery with all of the aggressive scraping of the peritoneal lining, and during the 4 days of chemotherapy that the chemo went into her blood stream. This is expected to some degree, but not to the degree Karen experienced it.
Her reaction to this was a typical reaction that chemotherapy patients have with intravenous chemo (what she will get when she is strong enough). When you have regular chemo therapy your white blood cell count goes down within 10-14 days after chemo. It is individual as to how much they go down, and the oncologists usually monitors it to see if you need neuprogen as a boost. After 3 weeks your body then starts developing the white blood cells on their own. Well, they didn’t expect Karen to have that reaction, but she did. Her white blood cells plummeted fast resulting in a fever. Now Dr. Yoo suggested STRONGLY that her local oncologist needs to be informed of this reaction and is prepared for it for her first Chemotherapy treatment. Most likely this will happen again at her first chemo. There is a type of “prevention” for this. She will need a shot of Neualasta. It is neuprogen that lasts for 3 weeks – just in time for her body to start producing the white cells themselves.

Karen got her hair washed at the room sink with the help of her nurse Thelma and Ann. We are avoiding the bathroom at all costs! It took a ½ hour for the sink water to get really warm. They did a nice job and Karen tolerated it well. She looks great! Dressings got changed today. Ann got a look at her chest tube sites. Not bad looking!
Lunch has just arrived as well as the new pain meds and stool softner.
Lots of advice about constipation: Drink a warm drink in the a.m. Eat oatmeal or corn meal everyday. Drink a room temperature water bottle at night and she’ll poop by morning. Whatever…

POSSIBLE discharge date given by Dr. S is Tuesday. Poor Karen’s eyes got huge and nausea followed. She has a lot of fears.
Ann told Dr. S that Tom wasn’t coming until Wednesday and he seemed fine with that. The worst case scenario is Ann will have a roommate for one day.

Please pray that she will not let her fears stop her and that she continues to get stronger to face them.
Fears: eating and discomfort afteward, changing of pain medication after finally finding a good combination, BM’s, pain while walking – not being strong enough to go home when they say, etc Karen specifically asked that you would pray for her JP tubes to stop draining, she’d like them removed.

Thursday, November 24, 2005


Last night was a painful night. Not a lot of sleep was accomplished. Poor Ann had a tough first go at being alone with Karen. She handled it well. Karen’s pain was mostly from her lower back with intermittent gas pain. They tried rolling her and different positions, but nothing really helped. Benedryl was suggested and the ZZZZZs began. On Tuesday night and during Wednesday morning naps, Karen had bad dreams. Last night the dreams did not return. Yeah! Karen was very tired when I arrived this morning, so she napped a lot. Nausea reared it’s ugly head again, but meds helped that right away.
Her breakfast consisted of a few bites of scrambled eggs and 2 bites of English muffin and some orange juice. She mistakenly drank coffee (we thought it was tea) Yuck!! She then snoozed off and on until just before lunch.

She walked before lunch and she went far! She almost made it to the nurses station. She said that it went better than she thought it would. After returning to bed she coughed/yacked and tooted at the same time. We tried not to laugh until she was done coughing! It was a good one!

She is on continuous oxygen. We call it the Lasso now because when we had Karen stand up last night, both Ann and I forgot to take the O2 off. Karen’s head did a lovely backward swing and Ann and I about died! We quickly got it off and Ann dubbed it the lasso from then on.

I had a lovely visit from my Uncle Jim Larsen. My mother- in -law’s brother. It sure was good to see him again. Thanks Uncle Jim for thinking of me and my family today.

Lunch consisted of orange jello (2 bites) turkey sandwich (2 bites of wheat bread only) and cranberry juice ( drank almost all of it).

This afternoon has been consisted of a lot of gas bubbles that won’t go away. A reminder of Monday’s pain. It is a drag. When is this going to stop!
Tim called and Karen had fun talking to him between pain – it was a nice diversion. Thanks Tim!

The second walk – she made it to the double doors just before the nurses station. Not as far since she was battling the gas pain at the same time. Now she is sitting in the chair more comfortable, but no passage. Some nausea at the end of the walk with slight improvement when she sat. Once again the nausea meds helped.
Jane, our favorite nurse ( we really like her now) told her to go off oxygen and take deep breaths and let’s see what happens. She doesn’t think Karen needs it. We will keep the pulse/ox monitor on.

Good news is that she is taking Tylenol only if her fever goes above 101. We haven’t had Tylenol yet! The last temp at 4:10 was 97.2. YEAH!

Brief note from Ann:
That twin thing is alive and well here, Kathryn is amazing and anticipates Karen’s every need. I told Karen she was going to have to order me around because I didn’t get those mindreading genes! Kathryn told me a funny story about when Karen was really struggling the other night (Tuesday). It turns out that Dr. Gary told her in polite words to shut up because she kept answering for Karen! Kathryn couldn’t figure out his problem with that since she knew what was wrong and it was easier for her to answer than it was for Karen. Sure enough when Karen answered it was exactly what Kathryn was going to say!
My role is basically to provide sports analogies to get through the walks and pains. I am the chief cord unplugger now too especially since the lasso incident! I am also learning to call the nurses station and tell them about bodily functions as they occur so the nurse and come and measure, help, and provide the appropriate medications. I am trying to watch Kathryn and learn everything before she goes. She is incredibly capable in all aspects of Karen’s care and doesn’t miss a detail.
Thanks for all of your prayers, they are surely working as Karen makes progress by the minute.

Happy Thanksgiving to everyone!

Wednesday, November 23, 2005

November 23 - A Great Day, Indeed . . .

November 23, 2005 Day 14

Howdy, All.

Being far, far, away like you are I have not had a lot to say over the past few days, but the happenings of the last 36 hours have me feeling pretty good, so I thought that I would take a bit of time and share some thoughts and updates with y’all. ( and if there happen to me more than one person in the room, that would be ‘all y’all.)

First off, can you believe what is happening with Karen? I know I sound like some kind of deranged fan at a Carpenters concert, but man what a great story. I, like you, am far away from all of this so my role now as far as recovery is to be supportive and talk on the phone and to that end I did my duty this morning, and I came away from the conversation with a smile and a shake of the head.

It’s funny how when a loved one is in the hospital that you have so many ups and downs that you find yourself in a sort of hazy blur most of the time so that the really good days seem to be nicer than the bad days, and the bad days aren’t really as good as the good days but it could have been worse, right? I think it is a bit of a coping mechanism and for myself I find that I keep my eye on the prize rather than stressing and worrying about what happened last night or this morning. While away, I really judge how she is doing by how she sounds, how long she talks, and what she tells me. Now I understand that you may read that and say, “ …so you’re saying what? The blog is not my friend? The blog speaks untruths? You don’t use the blog for guidance and the secret lottery numbers?” Au Contraire. While I am a Far Away Observer, I too rely on that information because the calls I get are generally not that long, the facts are fuzzy, and frankly I am not looking for the medical update while on the line. I am saying that with Karen, I can tell when a “fine” means I feel like crap or when “fine” means I feel pretty good but I don’t want to say it too loudly. It’s a matter of communication. That, and 16 years of hearing the occasional “that’s FINE with me, honey! Really. Fine. Enjoy yourself. I’ll be Fine.” Like the Eskimos, who have 37 words for 'cold', I know Fine.

That being said, a 30 second call with the Dear Dear ( that would be Karen for those who are now confused) tells me a lot more than a clinical list of the meds she is on that day. The first days after I left I did not sense to great a change in Karen. She was Maintaining The Proper Clinical Path but her information was groggy and her stamina was almost zero. After a few sentences of an update from her, she generally announced that she was tired and needed to go to sleep and that was it. Back to K1.

The morning after the fever hit I talked to her and she was upset. She had the energy to tell me in her own words how painful everything was and how frustrated she was that she had built up so much strength and was making great strides until the fever hit her. They could not get the pain under control and she was miserable and afraid for tomorrow. What was wrong with her? What caused the fever? Why did they take out the catheter so soon? When will the pain begin to lessen? Why do I have hallucinations and leg twitches? And let me tell you that just that conversation cost her a lot in energy points. She was abruptly done and it was game over.

But this morning, she was a different person. First off, she called me instead of vice versa which was a nice switch and unexpected surprise. Secondly, She launched right into how her night was and how she was feeling. While in the past weeks her sentences came in bursts according to her breathing (“I am fine but I’m feeling . . . . a little tired so I will take . . . a nap and then watch . . . . some TV . . . – sort of like Christopher Reeve used to talk if you can recall that) today she had something to say, sister, and she talked to me. Asked about the boys, what Tucker and I did yesterday on our daddy day and then quizzed me on the matter of now that I had done that with Tuck, was I going to do the same for Hudson. Well, that was a pleasant surprise and I wanted to test the brainwaves in the water if you will, so I asked her something that only she would know. I was going to the bank this morning to make a deposit for her Jazzercise and had been searching for her checkbook to grab a deposit slip. I had not found it so I asked her (very nonchalantly) if she remembered where the heck her checkbook was. I expected nothing. What I got was a, “ hmmmm. Well it should be in my purse. Where is my purse? Ahhh . . . try looking in the bar area and if not there then – oh, wait – crap! – I have my purse here in the hotel room. Why don’t you go upstairs, find a new box of checks and grab one of those deposit slips and if you can’t find that go to the bank and see Katrice. She’ll take care of it for you.”

My smile was very wide as she finished and my first inclination was to say something very juvenile like, “That was great! You put so many sentences together and they were correctly constructed with proper verbiage and no inappropriate pauses!!!” I quickly regained my sanity and condensed that into, “ Yeah, that’ll work.” Same thing, almost.

But there was no slur to her voice, no straining sound of effort behind the words, and she was more like my Karen than she’s been in 14 days and 9 hours. After that we babbled about something trivial for a minute and then she says, “ Is my mom there?” Well, we had far exceeded the talk range of 3 minutes or so that our conversations were normally limited to before Mr. Nap showed up so I said something brilliant like “ uh . . .sure. Love you dear dear . . .” and I pushed the phone at Joyce. Joyce then fled the room looking for another phone and so I turned and thrust the phone at Al, who was sitting defenseless at the table. Well, they both were on the line for several minutes before hanging up, giving this Karen-initiated call a duration of about 15 minutes. 15, I tell you!

Well that was cool. I was pleased.

And then tonight I got back from Small Group and there was Kathryn’s evening blog and it made my heart just swell. Things are sounding so very good, Karen sounds stronger and I think that the light at the end of the tunnel is starting to glow dimly again. I mean, I know Karen and there was not a doubt that she would bounce back from this dip but she has done it in extraordinary fashion! I picture Karen, Kathryn, and Ann all doing laps in the room and chattering away at the same time with Ann offering support and Kathryn cheeping away about how good she looks, how strong she looks, etc. and Karen watching the tiles slide under her feet like she is concentrating on a race that she is in. And then to finish off the evening with a light snow falling past the windows, blanketing the trash dumpsters and the ambulances, annoying the sleeping security guard, and covering up the life flight helicopters asleep on their pads in a fluffy coating of white. . . it’s a picture from Thomas Kincaid, almost. If he did inner-city DC scapes. In winter.

I think that tomorrow is going to be a new high in this adventure. I think that she will be walking good distances again, that her strength will be back, and that she will make a few trips to the arctic toilet in spite of the risk of posterior frostbite. I believe that she will consume more grown up food. I even believe that at least one, if not all of the JP drains will leave her.

And no matter what happens, I will give thanks. She’s still here, and she is getting back in to fighting trim. And we will bring her home, soon. That’s the prize.

And why, some may ask, must you fight so hard for this prize? Aren’t you angry at God for having to play this game? Ahhhhhh, grasshopper. . . . you miss the bigger picture. Who was it said that “what don’t kill you only makes you stronger”? Karen is going through this for some reason, and it is not for her, me, or anyone on this earth to understand why. To try to grasp that is fruitless, and a little naïve. How could we know and even if we did, what would we do with that information? Write and complain? Call some great No Help line in the sky? Worthless. When we are done with this, we will have gained a greater value for time, a true knowledge of the unfathomable depths of our friends’ and families’ love, and a strength that comes from God to persevere. Think about it. There are a few things that I can think of that would be worse to endure and I hope I don’t have to do them very soon. But if we do, we know right where we stand: with God, our friends, and our family right at our backs. So close are they, in fact, that if we even tried to step back in fear we would be firmly held up before we even had a chance to throw our arms back. And let me tell you, there is no better feeling than that. Everyone should be so lucky.

Enough said.

Sweet Dreams

Great day!

Mark has already given you some of the good news about today. I will recap.

Her catheter came out this morning with much fear on Karen's part because it was so painful last time. I finally had to say that we needed to trust the doctor about this and it is 2 days later than the last time. No pain!! YEAH!
She was able to empty her bladder 3 times today so far. Once even managed to use the freezing restroom in her room after her second walk, but has decided that won't be a goal quite yet -too far away. First 2 ultrasounds indicated that she is empting it 100%. She experiences cramping afterward- a new pain, but hopefully this will go away once the bladder works more. We now have a bedside commode and a bed pan if necessary.

The best good thing that happened today came when Ann walked in the door! Her sense of humor and willingness to learn the ropes right away was great. Now I know how Tom felt when I walked in the door. YEAH!
Ann arrived in time to be a part of Karen's first walk ( the laps from the bathroom door to the room door). Karen was weak but managed well with discomfort. YEAH!
Her white count is going up! YEAH!
Her temperature has been 98.7 all day with oral Tylenol in her system. YEAH!

She is now on a solid food bland diet. No fruit of vegetables since they are perishable. Another rule: no perishable food in the room. Lunch was apple pie and bread and beef stroganof and cooked carrots or something. THe main dish was not pleasant to look at let alone smell. Ann quickly got the main dish out of the room and Karen concentrated on a few bites of pie and bread. DInner was a mistake. They brought her fruit. So they took her tray away and as of 10:00 pm the new dinner (chicken soup and crackers) had not arrived yet. A possible flash back to the light bulb senario.

During my nap I missed the second walk. Karen has to wear a surgical mask when she leaves the room. She hates it, but well what can you do... SHe onlyl went one door down if that much, but it is progress. YEAH! She feels weak so her strength has taken a hit from last nights' fiasco.

She is coughing a lot of flem up today. YEAH! She had trouble getting it to come all the way up yesterday, so they gave her this suction type thing she can put to the back of her throat to help bring it up. It kind of looks like a thin gun. She has become a pro at using it. She even coughed some up on her own when she couldn't get to the "gun" soon enough. Progress. Small steps are great aren't they?

Her third walk was out in the hallway and she went two doors down. YEAH! Ann and I could see the determination back in her face. It was nice to see I tell you! YEAH!

Another antibiotic has been added to Karen's coctail. I will list them, but I have no idea of teh spelling. Diphlucin, Cefapin, Vacomiacin, Tobramiacin. No explanation as to why one was added. A question to ask the doctors tomorrow.

Please know that your prayers are working. I firmlly believe it. Thanks so much and keep up the good work. Please continue to pray for teh fever to be conquered and we can get rid of the tylenol. Pray for continued postive attitude from Karen. She REALLY needed today. A lot of baby steps that we all cheered about.

I am going to sleep at teh hotel tonight. I have mixed emotions about it. I hope ANn will call if she or Karen needs me. Knowing her that will be the last thing she will do.
I am going to sleep with a light snow falling in DC. Kind of a beautiful ending to the day. It's been awhile since I smiled while walking back to my hotel room.

See you all tomorrow!


White blood count

Ann arrived safely at the hospital and she’s already watched a movie with Karen and was giving foot rubs when I called. I didn’t know she knew how to give foot rubs. I know this isn’t about me, but …

Karen’s white blood count is back up. Her catheter is out. Her fever hasn’t spiked again which surprised her doctor. Her energy is high and she just finished doing 'laps' in the room (not walking the halls due to lower energy and infection concerns). “She is doing great” and is surprising the doctors.

Cracks me up, two swimmers talking about doing 'laps' in a hotel room. Finished a 150 today but didn't do any flip turns. The last 25 was a no breather. Wonder if they would wear those funny caps for morning workouts?

No flowers please!

Wednesday morning:

Well, the fever was brought down by a cooling blanket and 2 ice packs. We eventually got rid of the ice packs. Karen was very emotional last night and didn’t like this turn of events. In her mind the fever brought forth the possibility of death, and it shook her. It took a lot of talking and I requested Pastoral services to come. We had a lovely visit with a female pastoral resident around 9:45 pm. She was able get Karen to be realistic as to what she can control and what she needed to let go and let God. She had Karen face her biggest fear, and to say it out loud, and told her only God knew what is going to happen, and that Karen was in charge of saying “I will” statements to herself of what she can do for herself. Such as:
I will continue to diligently do my breathing exercises.
I will rest and relax to let my body heal and fight this fever.
I will let all of these machines monitor and take care of my while I am resting, and trust that they work.
I will trust everyone to do their jobs!
I will go home.

She had trouble sleeping, as you can imagine with the cooling blanket. She got cold and wanted more blankets which we couldn’t cover her up too much since that would defeat the purpose. Some gas pains emerged without relief, but they were very infrequent compared to the last two evenings. They hadn’t happened in a while and I was getting concerned. Boy I was glad when they started again. Funny huh? I wish they would “see the light” more quickly thought –those sad – lost bubbles. By 1 am we were a bit desperate for sleep. The nurse came in with Toridal and she went to sleep for a solid 4 1/2 hours. YEAH! We are beginning to love Toridal it seems to do good things. Her self administration of her narcotic goes down when she gets it.

Our tube count remains at 5. Our IV bag count went up from 3 to 4 since the 3 antibiotic cocktail is given intravenously. Our machine count went from 0 (we got the monitor off yesterday afternoon) to 5. 1. Pulse/Ox monitor 2. Cooling blanket -a machine keeps the water at a constant temperature) 3. The heart monitor got put back on 4. Automatic blood pressure cuff that took her blood pressure every two hours. 5. Oxygen – although the doctors didn’t really think she needed it once her respirations got back to normal, but Karen opted to use it while she slept.

This morning she is now on a Neutopenic precaution which will help protect her from bacteria. A sign is on her door. She cannot have any flowers since standing water tends to create stuff to grow in it. So, no more flowers until further notice!! Any one who visits and has a cold, must wear a mask. I, and all others that come to her room must wash their hands before touching Karen. I was already pretty good about that, but not 100% especially in the middle of the night. It won’t be too hard to make it 100%.

Her pain is better. She took the o2 off this morning. SHE is very tired and keeps falling asleep – good! We will let her body rest and hopefully we will walk later in the day. We have permission to turn up the blankets temperature since her body temp is 97.5!!! She will get Tylenol suppositories (she doesn’t like them – who does!) to manage her fever. She is happy to be warmer. We won’ t take off the cooling blanket until we know her temp won’t spike again.

We are glad that our sister in law (Mark’s wife) is coming today to help out. Thanks Ann for giving up your Thanksgiving for us we really appreciate it. A second set of ears and hands and encouragement will help both of us.

I must admit that last night put an emotional toll on both of us. We both cried in front of each other. This just wasn’t in her or my plan. I guess we both need to trust God will get us through everything. A lot happen quickly and we didn’t react well to it. All of the sudden there were 2 nurses and Dr. Gary (who Karen and I can’t decide if we like) there all of the time with all of these machines coming in. It was overwhelming to say the least.

Pray for the medicines to work on her fever so the blanket can be taken off. Pray for her body to fight this fever. Pray for positive “I will” statement to be focused on today.

Thanks to Mark for posting the blog last night on my dictation. Thanks Mark for your encouragement and funny jokes too – I sure needed that!

I am a day behind on all of the emails. She will hear all of them eventually. She loves hearing from you. Sorry I am not responding to the emails as I wish I could. Know she appreciates your thoughts.

That is it for now.


Cooling Blanket

Last night Karen received a cooling blanket and Tylenol suppository which reduced her fever to 99. She also received a muscle relaxant and more wires. She is now hooked up to a pulse monitor (the finger) and a blood pressure cuff.

Ann heads to D.C. this morning and is leaving early to beat the I-95 holiday traffic. Overheard Karen last night saying she is looking forward to Ann's visit but she could be hallucinating again. She’ll be the first advocate to arrive with a pad and pencil rather than a laptop. Might be rough.

Tuesday, November 22, 2005


Karen has a 102 degree fever. They don’t know the cause and are taking urine samples, blood cultures, and chest x-rays.

Additionally, her white blood count is low. This occurred two days ago and she received Neupogen. She responded well to that drug and her counts were back up so they took her off it this morning. She'll return to this therapy.

They diagnosed this condition as Febrile Neutropenia which can occur after chemotherapy.

In addition to being treated with Neupogen, she will be getting three antibiotics for the next three days along with Tylenol.

Her hallucinations are still occurring due to the pain medications. They are going to continue to administer the same pain medicines until her temperature and white blood counts return.

Karen’s red blood cell count is also down. They are going to give her Darbepoetin.

Good news.

She hocked a luggie yesterday and another one today. Her distance wasn’t very impressive but that’s another goal to shoot for. She is also passing gas – painful but relief at the end.

While talking with Kathryn, they had the 3rd fire drill. This means Kathryn and Karen can’t leave the their penthouse. Like Karen is going to leave the room anyway.

This posting has lots of long words that mean gobble-de-gook to most of the readership. However, her prayer requests are simple - lower pain and fever.

Tuesday morning through lunch

Last night was pretty good. If it wasn’t for the gas pain with would have been a great night. They seem to get stronger and more frequent but there isn’t a result! It is so frustrating. I got my best sleep yet, and Karen actually had to yell at me to wake me up once last night. Thank goodness her NG tube is out and she had the voice to do it. I guess with the ear plugs and getting used to the beeps and blurps I am finally able to sleep more soundly when to opportunity of sleep is there.

The pain continues this morning. We will add a pain medication that will help her rib pain while walking. It is called Torital. She is sleeping as of 9:15 and when she awakes she will get this in her system – then try her first walk.
There are some minor details I think I have forgotten to write about. She has had a low grade fever of 100 degrees since yesterday morning. We are told this is fine and not to worry.
Early this morning on rounds she was told that her red blood cell count has been low for the last couple of days. It is not rebounding so they will give her some medicine – the name escaped both of us- to stimulate the bone marrow. This should give her more energy. Her white blood cells are low as well and she has been receiving meds for that the past couple of days. This med is called Nupirgen. She continues on the blood thinner Heprin.
Another side effect of the narcotic are small hallucinations. Sunday night produced two. One was a pyramid that had lollipops all over it. Karen’s favorite was the multicolored high top tennis shoes – “they’re so cute”. She didn’t have any last night. That is good. Personally I wish we could get this pain taken care of without the narcotics. She doesn’t like feeling so tired and dopey.

Anway, we really hope the walks go well today. This is a frustration for her not being able to do that without pain or wooziness. She feels her body is letting her down. I addressed this issue privately with the cute green eyed doctor this morning. He assures me that everything happening is normal and that she really is doing well. I passed this message on to Karen. Cross your fingers folks!

11:00 am Karen’s first walk was out to the hallway, and she made it only two doors down from her room but that is progress since yesterday. She received the Torital before her walk, so it required less narcotic. It worked. She had to turn around due to being tired – not pain driven. YEAH! Torital was only order once for today. We will request it again for the next walk. Her lower left eye puffed out but is lessening. We are hopeing that it is not a reaction to Torital because we like it!
She and I accomplished our first bath together. Usually the nurse does it while I escape. Our nurse today is not as efficient as our Jane of the past. Her spirits are better after the walk. She was disappointed on how little she walked – so I see motivation setting for the next walk –YEAH!

I left her with her first all liquid meal. She is not hungry at all. I opened the chicken broth and quickly shut it - the smell did not go well. She tried one square of the red jello - wrinkled her cute nose and we put that away (too sweet- is there such a thing?). I left her with the tea and cranberry juice. She was told not to rush eating. I don't think we will have a problem...
Thanks for all of the cards and care packages.

Monday, November 21, 2005

Monday Evening

Well, Tom got it mostly right except the catheter issue. Here's the scoop. I was able to get away to the hotel for a while, but I promised Karen I'd be back soon.

The good news is that Karen got her NG tube out this afternoon. She is doing well without it so far. The JP tubes are producing a lot less. She also got her catheter out. That did not go well. Too much pain and distention of her bladder, and she couldn’t pee to relieve it so it has been put back. They may try again in two days. Karen will be hard pressed to try it tomorrow.

Karen’s first two walks were unpleasant with nausea.

The frustrating news is that they believe her muscle twitches and nausea are a result of the amount of pain medication she is taking that has a cumulative effect. They took her off of it totally for a little more than one hour. Of course, they started when I was at the hotel – I had no idea. Karen called me after ½ hour and asked me to come over. I arrived to Karen in pain. Wow, that wasn’t pleasant. She is now on half the original dose (.2)/.2). She is still uncomfortable and afraid to move. Now we have to decide how much to increase the pain medication if it is needed. Either increase the base level or increase the self administered amount. The muscle twitches are coming back already, but not as frequent. Our other option is to change narcotics/medications.

The third walk today, after the new dosage, was painful – she couldn’t go much further from her room. The nurse told her she didn’t have to walk tonight, but Karen was stubborn and wanted to try. GO KAREN!

Her gas pains still persist with a vengence and with no “end” result. Gosh, I sure wish that would happen.

We have increased the dosage this evening to .3 – base level and.3 demand. Dr. Gary wants to talk Dr. S about changing her meds to possibly Torital which is a non-narcotic.

She will start real food tomorrow now that the NG tube is out. They will try to switch to oral medicines as well in the next couple of days. We really need to get the right “recipe” for this pain. So prayers in that department would be great. During the extreme pain from the distended bladder and the lower dosage she said this whole thing wasn’t worth it. Then I read her some of your emails to her and her spirits got a little better. Thank you all!

That is it for tonight.


Monday Night - Crappy Monday

Monday November 21, 2005

Kathryn still can’t get the computer to talk to the network at the hospital, and she has not been back to the hotel all day, so I am back to give you my understanding of what is happening. I talked to her at about 6:20 Pacific and Karen did not want to talk to me because of the pain and discomfort. I got the scoop from K1 and I will do my best to relate it to you. I don’t know if I have the facts completely, but will do my best.

This morning they removed the NG tube. That’s the good news. The bad news is that now comes the time of fear in that because the tube is gone there is no back up to prevent nausea and remove the bile from her stomach. It either goes through the proper channels or it comes out the entrance. The latter is not a good option. So she is wrestling with the discomfort of her now-vacant esophagus and throat which will take time to heal plus the heavy fear that their may be a wretch in her future. Result: Tense.

They also decided to remove her catheter this morning, which sounds like a great thing. But what if it hurt to sit up, much less get off a chair and onto a bedpan or try to stretch for the toilet? (That’s a 5 minute walk across the room) Not good, and apparently her bladder is working just fine which caused some very uncomfortable messes in the bed and surely upset her something awful. I know that this would make her very upset and K1 handled it well. After a stretch without the catheter, they huddled up and decided that they should not have taken it out and decided to put it back in. Any of you ever have one of these things? Like driving a bus through a drinking straw, and about as comfortable. When they re-inserted the catheter it was incredibly painful and that was all the more part of her crappy day. Result: Lots of pain, but better peeing.

They also came and stripped the JP drains today (see yesterday’s blog for a play by play of that thin slice of heaven) which only added to her pain and frustrations. Result: more pain.

Then the capper. The docs got together and decided that the muscle twitching and some of the nausea that she has been experiencing were the result of too much pain meds, to they decided to cut her Dilaudin in half. HALF. Add up the above pain and discomfort and then take away pain meds, and, well, I cant imagine.

Seems they are trying to solve the twitching and nausea and at the same time wean her off the IV based meds and onto the oral meds. At the same time. I feel awful for her.

K1 was calling a meeting of the docs as we hung up to get this pain under control.

Oh – and get this – someone, I don’t know if it was a doc or a nurse, mentioned that they might release her from the hospital this weekend. She went into low earth orbit. Still eating through an IV, four JP drains hanging off of her, can’t walk to the toilet, and they are talking release????????? She had a fit, and rightly so. Turns out someone was running their mouth or said it in jest and that is NOT the case. Well, no kidding. But the damage was done and I am sure that she went from 0 to Terrified in about .1 second. If they tried that crap I would be on a plane tonight if need be and get that handled. What a load.

So, it’s not pretty. Pray for less pain. Pray for getting out the drains. Pray for strength for K1 and Karen as they are going to need it.

I hope I got all of this right and I trust that K1 will get that computer whipped into shape ASAP!

Keep the emails going K1’s way. When she gets that computer up, she can read them all to Karen. That will help. I am praying that in a couple of days this will be a memory and we can start looking to a week down the line when she is making some progress against the pain. It’s hard to believe that she is not even two weeks out of surgery yet. Seems a lot longer than that.


Monday - mid day

I am so sorry you haven't heard from me for a while. I can't get connected at the hospital anymore. I will work on that later. I write from the lounge in the hotel. As Tom had kindly posted for me last night, Karen is going through some rough spots, physically but more emotionally. She is tired of pain, and discomfort. She is tired of shots, NG tubes, just about everything.

Today she started feeling good. The night wasn't as bad as predicted. A lot more gas pain last night, but not untolerable. This morning's visit with teh senior attendent said that he thought the NG tube and the cathedor could be taken out today. Karen is a little concerned since she moves so slowly about “making it” to the bathroom. They will bring her a bedside commode if this actually happens. Of, course there is always the dreaded bedpan as well. We will see.
The muscle twitches may be a result of an imbalance of her electrollytes adn they will check that.

This all happened before Karen got out of bed. After a bath and sitting in the chair we decided to walk. During the first walk everything changed - she got woozy. We barely left the room. We high tailed back to her chair as quickly as possible and called the nurse and got the basin. She came and connected Karen to the NG pump and was able to extract some "stuff" She gave her her gas medicine and then we all waited. I must say I almost panicked and had visions of her throwing up. She has since been woozy off and on with various degrees of wooziness. This makes her very sad and frustrated - small tears again then pain in the throat from crying.

She tried a second walk after being comfortable in the chair for awhile. We only went a small way wehn she ahd to turn around. Put her in bed and the wooziness was still there but not as bad. The nurse assured us we can wait to get the NG tube and cathetor off. I said we would do that since it now frightens her to think about going without them.

She is resting and Dr. S ahs not shown up. I got tired of waiting and am eating lunch and getting a shower. Hopefully a nap later this pm

Her ribs feel more tight than painful today - progress. Now that this new GI pain has started it would be nice to get rid of, or lessen an old pain.

Please continue to send her emails, etc her way she REALLY loves them.

Please continue to pray for emotional and physical strength for both of us.


Sunday, November 20, 2005

Sunday Night - Email alert!

It was a very painful day with the gas bubbles rearing its ugly head more frequently, and this is progress but is causing her to press the meds more often which makes her feel better but also makes her very groggy and having to take so much pain killer makes her unhappy.

The first walk of the day was uncomfortable, the second walk went well, and third walk made it past the nurses station and back (which is a good 200ft round trip) and she said that felt good but was very tired after that. The fourth walk was very uncomfotrable and didnt get 5 feet from thedoor because of the pain, and once she got back it tok her a long time to relax from being so tense. Everything was painful from then on.

She finally got relaxed and then they showed up and stripped her JP tube drains. This is a new thing in the last few days. The take the drains and pull them out straight from her body and then squeeze the tubes and pull towards the drain. The reason is that as the volume of fluid decreases, fibrous liquid tends to build up in the tubes, blocking drainage. The do this clean out to make sure that it continues to drain. It's very, very painful.

Then the daily heparin shots in her arm were given, which burns a lot, and she cried.

She is at a point where she wants the pain and prodding to just stop, and wanted me to let everyone to know that she is feeling really low right now and can use your prayers.

Great news: No nausea at all from the NG tube being clamped off. the test numbers for the bacteria count or something in her belly are going down constantly which means that her stomach is cranking up. The number will be checked every 6 hours and hopefully we lose the NG tomorrow.

if you have the time, would you send Karen a cheer up and hang in there email? Send them to me at kathryn.rudd@comcast.net and I will read them to her as soon as I get them.

Thanks, everyone. I'm off to be cheery.


Saturday night

We had an interesting night last night on 11/19 in to 11/20. It was started with Karen not being able to sleep! She had a new discomort that started after sitting in the chair and getting back in bed for the night. It was a tight feeling smack dab in the middle of her chest area between her breasts. We called the nurse after it didn’t go away. She came in and asked questions then went to call a doctor. She then came back and said Karen would get an EKG and a blood draw as a precautionary measure, which is normal procedure for Dr. Sugarbaker patients. There goes the dream of an earlier bedtime. The tabs for the EKG were needed in the area just about her right chest tube location. We called the nurse in to see if the dressing could be moved to place the tabs onto her skin in all of the right places. These tabs were blue and square. Her chest looked pretty colorful with her circular monitoring tabs and these put together. With “the girls” showing and all of these tabs were on, and her hair in a pink scarf, Karen joked by saying “hey Tom, take a picture!”

Karen proceded to have trouble sleeping so she was given liquid Benedryl. Around midnight (after another fit of giggles) we were able to sleep. What a glorious sleep. We both slept soundly for 3 hours. She was awakened by the same old lower back pain, and rib pain. There was some GI pain but it went away. We were awake for 2 ½ hours after that trying to catch up to the pain with the meds. Even reading a book to her, Peace Like a River, didn’t put her out like it always does. We asked for Benedryl again. Normal protocol said they weren’t suppose to have it after 3pm but Michelle our nurse broke the rules for us –Thanks Michelle! We finally slept at 5:45 until 7:30.

Dr Sugarbaker just came in. Everything came back normal. Dr. Sugarbaker said that the chest discomfort is most likely a result of the NG tube irritating the esophageal passageway. Guess what the treatment is! Walking and sitting straighter in the chair. We are clamping the NG tube to see how she does with out it. They are suppose to check on her every 6 hours. If she doesn’t get nausea and discomfort all day than it will taken out “sometime” tomorrow. If she is teh slightest naseated it get turned back on. She can officially take a shower. NO WAY until hot water rears it’s head in this room! WE ran the shower ane it is luke warm. WE will see...

Have a great day everyone!


Saturday, November 19, 2005

November 19 Tom Coast to Coast

November 19 – Tom on the way home

Baltimore (AP) – Here I sit in BWI waiting for the flight to Chicago and then home to Palm Springs. Listen all you Washington DC dwellers: you have my admiration and respect. This traffic nightmare that you live in – I don’t know how you deal with this quagmire on a daily basis and maintain your sanity. I know that I was gazing longingly at every Metro Station that I passed, wishing it was going where I was going. I came up the main drag from the hospital, Georgia Avenue, and they had closed the street down for a parade!!! A main thoroughfare and state route and Mickey Mouse was slowly walking down the middle of it! “That’s insane”, said I as I wove the White Turd into the hinterlands of Silver Spring trying to find my way around the inconvenient blockage. I drove through some beautiful neighborhoods of million dollar cracker boxes and did end up back on Georgia at the 495 without much delay and while doing that it occurred to me whey they had chosen Georgia for a parade: It’s the only frickin straight street for 6.2 miles! They had no choice in the matter, and I can see that now . . . but man! And on a Saturday, too. What are they thinking? Crazy Colonists. I will gladly take LA in rush hour. We have straight roads.

The cancer news weighs very heavily. Since the situation has changed so drastically in the last few days as far as the prognosis goes I am thinking it is going to take some time to sink in. While right after the surgery and before the pathology reports came in I was seeing some light at the end of this tunnel and could see lots and lots (maybe LOTS and lots) of Karen years in the future I was very confident that we were well on our way to crushing this thing. After all, the surgery had gone perfectly, right? Yeah, it did, and that is the great part of the story. When we sat with Dr. Yoo he made sure that we understood that diligence on our part is key. We need to keep the cancer watch team on high alert not just in the next year, or five, or ten, but for the rest of Karen’s life. Unlike a breast cancer, a prostate cancer, or other types of cancer where you are considered cancer free and cured after five years or ten years depending on the disease, you are never, ever considered free of this Adenocarcinoma. It’s on board for the entire ride, and what we have to do is watch it like the terrorist that it is, and if it so much as looks at us wrong it gets a mighty whack with a small sledgehammer. That’s all there is to do.

Keeping Karen’s attitude and health up will be key because if she is not strong as we fight this, she will lose. That’s not a might, that’s a will. Jazzercise! Jazzercise! That will be our mantra. . . . We need to watch her weight as well as her physique. She cannot get too thin and sinewy. I can’t believe we are back to the original mantra that Dr. Luke gave us in February: “ There are no skinny cancer survivors. Period.” So there we have it.

There for a while I was relaxing a bit on the travel and adventure schedule for the upcoming years. Right after the diagnosis I was of a mind to pull all of our dream trips forward and show the boys some of the wonderful things out there while we still could as a family, even though Hudson is still probably too young to absorb a lot of it. After things began to lighten up a bit that schedule relaxed, and the schedule stretched out again. Now, in the last couple of days, the travel agent in me is trying to get as much as possible pulled forward again. Where to start? So many adventures that I want Karen to have and enjoy with the boys, not just for her but so that the boys can look back on their childhood and have great adventures to remember with the family and Mom. Hey, maybe this is all overkill and Mom will be there for decades and that would be a true miracle and blessing, but I don’t want to take that chance. This is God’s timing, not mine. I am duty bound to make the most of what He gives us, and I will do everything I can to avoid ever having to look back and say, “we really should have done that . . . “

Bring the car around, Jeeves. We’re going for the country in a drive.

Of course it’s possible that none of this bad stuff will come to pass, and I am reluctant to look out that window right now, for fear of it falling on my fingers. Maybe in a while. For now Karen has to heal (which she is still doing in spectacular fashion) and we need to bring her home and get the chemo started so that we can finish it. (It works that way, doesn’t it?)

Chicago – I was planning to write some more while in the air, but the man in front of me decided to recline his chair for more legroom. I guess you can never have enough in the emergency exit row. The guy next to me was about my size, and we were both amused by the fact that in the travel magazine there was a small article about how to relax and exercise during your flight. Exercise! Well, I am all for that so I read on to see what amazing revelations that this magazine had.

1) The Ankle Roll. I can do that! Once I slide my backpack from under the seat in front of me, making careful use of the aisle as my feet and luggage pass by each other. Yes . . . yes . . . .that’s nice. Ankle Rolls. I feel more fit already.

2) Leg Muscle Flexing. It keeps you loose and relaxed during flight. That’s cool, just have to make sure I put my tray up or my onboard beverage and complimentary dozen mini-pretzels will end up in the magazine pocket. So, tucking in the elbows before we attempt a maneuver, we grasp the can with the left hand and the napkin and plastic grip-proof cup and stuck, attached napkins to the other and lift. Maintaining a careful distance between your elbows and the seat behind you (0.088 of an inch) and the back of the reclining seat equipped with the high-buffed bald spot in front (1.8334 inches) we flex! And release. Flex! And release.

Oh, that’s not very exciting. Lower tray with left index finger and return to normal sitting position. Keeping your elbows close to your sided, bend your head over and meet your hand for a refreshing sip of beverage. The Cup Curl, I suppose.

3)Lift Your Knees to your chest. Yeah, right. I can’t even see my knees because they are underneath the seat back of the guy in front of me, who is literally 6” from my nose. Ahh. . . that’s a good one.

Anyway, I am home now in Palm Springs. Bumpa and Grandma, along with Tucker and Hudson came to get me. It was a happy reunion! Tomorrow Bumpa and Grandma get the day off while the Guys and I go visit Thomas. They have earned their rest to be sure!

You read the great news about Karen and the poos, right? Fabulous news indeed. It’s the little things in life, I tell you!


Saturday evening

Here are some little events from this afternoon. We have had two fire drills today. Dr. Red was called over the intercom. This consisted of putting the dirty linen bin in our room and any of Karen’s full trash cans in the room to get the hallways clear. They are normally in the hallway so housekeeping doesn’t have to disturb us by coming in the room. The fire doors in the hallway were shut. We were not able to leave the room until Dr. Green is called over the intercom with an “all clear”.

Uncle Bob and Aunt Ginny visited us. It was great to see them and Karen always enjoys their visits. They have kindly agreed to do laundry for us. They are terrific! The laundry room in the hotel has a drier that takes forever to dry clothes and it is a big waste of time for us.

We are working on trying to get hot water in the room in anticipation of Karen’s first shower. We like to think big at times. Everyone seems surprised to find out that there is not hot water in the sinks. Our new response it “we challenge you to try it”. No one has taken us up on it. We hope that this issue doesn’t take as long to solve as the light bulb!

Karen has had longer naps today – at least ½ hour.
The biggest news is that Karen has had a very small BM movement. She has no urges or warning of this wonderful event but it is progress. This may start a series of discomfort for awhile as the bowels wake up even more. The nurse said she heard really good bowel sounds. The good night we were looking forward to may not happen, but we hope we are wrong.
That is it for now. “See you all in the morning”

Saturday afternoon

O.K. it is mid day around 1:45. Karen has had a bath, walked twice (once with Tom before he left and once with me after my 2 ½ hour nap and shower in the hotel room. She sat in a chair in between walks and stated that if felt good. Tom left at 10:15 and I arrived at 12:30. Karen seemed to be comfortable being left alone that long watching TV and snoozing while waiting for me to show. Did I mention that Dr. Sugarbaker came in this morning? He is on call this weekend, and came in with his residents. He is pleased with Karen’s progress. He anticipated the horrid NG tube might be able come out “soon”. Oh what a Happy Day that will be! We, of course imagine tomorrow might be the lucky day. She is feeling pain in her stomach area when she walks but that is normal. She is encouraged to walk with as good a posture she can (no huching, Jane the nurse keeps reminding her). This seems to stretch things out and Karen can feel it. SHe is doing well.
I wanted to add to Tom’s notes. The chemo therapy treatment they will use is borrowed from Colon/rectal cancer treatments because this cancer is the closest “cousin” to appendix cancer. That is how they determine what treatment to start with. If the first treatment doesn’t work, or is not as successful as needed (CEA not going down) then there are 2 other treatment plans to try.

Karen did not ask Dr. Sugarbaker’s “prognosis” this morning and I felt it was not my place to ask. I think she will address it when she is able. Most likely it will only be guesses anyway.


Friday night

Last night was uneventful. Karen slept in 1-2 hour sessions – with 30-60 minute awake time in between. The ribs hurt in the chest tube area, but the lower back pain was much better, but not gone. Still no nausea. The 4 remaining JP tubes will stay in today as well as the NG tube. They may try to clamp it off tomorrow to see what happens. The color from the tube is moving from a dark green to a lighter green which is a good sign that the bile seems to be almost gone from her stomach. Unfortunately the NG tube got blocked sometime from 3 am on and no one noticed until the Senior resident came and took care of it this morning. It was a little uncomfortable “catching” up, but things are good. No “toots” yet, but there is still hope! We were told to walk walk walk today. I am off to a quick nap and shower. I am tired. I will check emails after that.

Please note that my priorities here are; to my sister first, myself a close second, and the blog third. I will do my best to keep you posted on major happenings. If you haven’t heard from me please know that all is well.

Karen’s spirits seem good. I think the visit from the oncologist is still settling in her mind. Please keep both Tom and Karen and their families close in your prayers now that the road to recovery and healing is a bit longer than desired or anticipated.


Friday, November 18, 2005

November 18 Meeting with Dr. Yoo - Oncologist

November 18 Consultation with Dr. Yoo

This evening we met with Dr. Yoo, a medical oncologist who works with Dr. S and his patients. He is the only medical oncologist amongst a staff of surgical oncologists and this makes him jibe quite well with Dr.S’ treatment system.

As he explains it, there are two parts of the treatment that determine the potential outcome of the procedure.

1) the amount of cytoreduction that is accomplished during surgery, which relies on the skill and experience of the surgeon. It also is determined by how much of the tumor is interactive with organs, IE some bit of the tumor wrapped around a crucial organ or nerve system, prohibiting its removal. If those types of tumors cannot be removed, the success rate of the surgery is lowered. Karen’s procedure was the highest success rate possible.
2) The grade cancer that was removed. The more aggressive the cancer, the lower the survival rates are. One would hope for a low grade cancer, but there is also intermediate and high grade cancers.

So – follow me here – the worst case scenario would be a low success cytoreduction with a high grade tumor, and the best case would be a CC1 cytoreduction with a low grade tumor. And in between there are all the other combinations.

What Karen has is a perfect CC1 surgery with a high grade cancer. We were hoping for intermediate to low grade cancer, but what we have is a mix of intermediate and high grade cancer. Because of the high grade tumor, we now must include systemic chemotherapy as part of this treatment.

Now I am sure that you may remember hearing that systemic chemo does not work on this kind of cancer, and before you perform the surgery that is true. However, after the surgery, the heated chemo treatment, and the follow up with 5FU the volume of cancer cells likely remaining is within the range to be addressed by systemic chemo. So while the systemic approach can not touch a belly full of cancer and mucin, it can make a run at a ‘cleaned up’ belly.

As soon as Karen is deemed healthy enough (as determined by Dr. Luke at home) she will begin 6 months of chemotherapy. It will be a 48 hour treatment once every two weeks for a 12 cycle program, or 6 months. It will be done as an outpatient procedure. NOTE: Dr. Yoo will give us a written consultation report with the names of all the chemos to be used in the procedure, and we can forward them at that time. Go with me here. . .

The chemo has some serious side affects, the most notorious being a tingling sensation all over the body that feels much like after a limb wakes up from being asleep. There also may be some nausea. Good news is that only 5% of patients lose their hair any more, so that my not be an issue for Karen. She can and will be encouraged to continue exercise and Jazzercise throughout as much as possible.

That’s what we know right now, and there are still many unknowns. Dr. Yoo stressed to us how rare this cancer is and again reminded us that because it is so rare, there is no track record of treatment or survival. He did stress that these chemo regimens are FDA approved and are used by Colon cancer patients regularly. But again, it is a borrowed procedure that shows good results since there is not a specific, trial tested chemo for this Adenocarcinoma.

We are quite bummed out, and face this with disappointment. The biggest bummer is that while we have a good surgery, this aggressive cancer is frightening, and we don’t yet know what Dr. S has to say about survival rates in this scenario. We will talk with him about this.

So we charge forward. First thing is to get Karen healthy and jazzercising again. Then we attack with Chemo. After that, we test her regularly with the CEA test and CT scans, and go from there. We will take them as they come.

Talk to you all soon.


November 18th - The Morning Edition

November 18 Morning Post

And how is your morning? It’s already been a hopping party here at Washington Hospital Center. I arrived this morning to find that Karen had a good night, and is being spoiled by Kathryn as only Kathryn can. Karen says that if she pushed the pain button, moved in her bed, or made any kind of noise Kathryn would jump up and run to the bed. Kathryn read her books, they watched TV, and gave Karen ice and water. I believe that as a nurse, I fail miserably in this light. I did not even think to read her a book in the middle of the night. I can sure fix an occluded TPN line, though. Yes, sir. We all have our strengths

Apparently Karen still only slept in spurts of an hour or so, but they were sound sleeps. Now that the chest tube is gone from her right side, it makes it not only plausible but somewhat comfortable to sleep on her side for a bit, and that is what she did. She looks pretty good, I must say. The gas bubble is still on board and shows itself every now and then, causing Karen a bit of pain as it rumbles around. Foolish gas bubble! Why wont you show your face to us? Verily, we require you to come into the world and be smelled! I hope it finds passage today. That’d be good . . . . and smelly. I’ve tried to “seed” the process with some gas of my own, but that does not seem to be working well and earns me only a grimace, roll of the eyes, and declaration that I am truly a disgusting human. I’m just trying to help.

Today is Friday, and at WHC that means Time For The Doctors To Show Everyone What They Are Doing Day. This is Dr. S’ big rounds day, and this morning at 9:30 he and about 10 of his closest doctor friends came a-calling. Karen had just concluded a record-breaking walk from here to the lounge where she enjoyed stunning views of Irving Street NW. She shuffled back to her bed just in time for the Sugarbaker Show. He was most gracious as his PA Rob read Karen’s stats to the group and they dutifully scribbled down things like JP outputs, white cell counts, and the like. Sugarbaker almost beamed with pride as he checked her vitals, looked at the incision and talked about the procedure. He introduced himself to Kathryn and declared that he would not have made THAT connection.

When they got to the point of talking about tubes they arrived at the left chest tube. “ We’re down to 85CC on that. What do you think?” he asked Rob the PA as he gazed over his reading glasses and waited for an answer. The question hung in space for a few seconds and then Sugarbaker said, ‘let’s get it out of there.’ I personally thanked them all for coming and said that the removal made the visit worthwhile.

He also spoke in detail about her white cell count. Those little devils are the ones that attack infection and generally eat the bad guys. Her count is down on the low end of the scale, which is expected after chemo. It has gone from a 14 down to a 4.5 in the last few days. This is par for the course, and they are going to give her some meds that will boost the production of white cells to keep her in the green, so to speak.

So they breezed out of the room, and soon after Rob the PA and another doctor zoomed in and told Karen that they will be back in a few minutes to remove the left chest tube. They returned ahead of schedule and proceded to remove the tape, cut the sutures holding the tube in and then, while Karen hummed an off-tune broadway song, Rob whisked the tube out. It sounds a lot nicer now that I write about it, but it was pretty painful, mostly due to the sutures. This doc apparently was not very gentle and she was downright pissed off at him for his lack of gentility. She was so mad that she demanded that I agree with her that he was a jerk and directed me to massage her feet right away. Yes, ma’am! How do you respond to that? “Gee, honey, didn’t look that bad to me.” “Golly, you’re just exaggerating.” I think not. Who knows how all of this feels, but in my opinion just about everything must at least ache if not downright hurt. Today was the first time that I saw tears in her eyes but I did not know if it was from pain or the frustration of the doctor thing. Karen asked this morning if this was all worth it. Of course it is! It’s just tough to get philosophical with her when it hurts to swallow and she can’t even sleep.

Plus, as I believe that Kathryn made note of, the Central Line was removed from her neck today. That was not really a big deal for her, and the bandage over that little hole will be off by tomorrow. Happy days!

Tube Count: 5 Today we lost the left chest tube and the central line. Now, all that remains are the four JP brothers (1,2,4 and 5) the NG tube, her catheter for pees and the PICC line, which I see as a long term resident.

We interrupt this blog entry for a quick message for Karen, who asks me at this moment to relay this to everyone:

“ Thanks for the mail and the flowers and . . . zzzzzzzzzzzzzzz.”

And although Karen’s verbose tome is difficult to follow, it does bring to light a very important and cheerful topic. The cards and flowers that have been arriving daily are truly a delight to her. The first batch of cards, some dated as far back as November 9 arrived today by the WHC Mail Technician. I simply open the envelopes and then she takes out the cards and reads them. I am reminded of the Third Duchess of York who, back in 1774, used to speak of the great joy that she found in the colonists’ consumption of tea as a cheerful part of their lives. Some of you may have heard me read from her historical quotations on the subject. She did have an inspiring way with words.

But again I digress.

While I am away from Washington, I need you all to make a note to change the address for getting messages to Karen. You certainly may continue to send them to me, but the most direct route for information to her will be through Kathryn’s email at kathryn.rudd@comcast.net . Don’t forget the dot between Kathryn and Rudd.

Tonight we talk to Dr. Yoo about the ongoing chemo situation. I hope that we are not talking a huge regimen here. That’s really all I have to say about that.

I am heading home tomorrow, and am looking forward to seeing the guys very much. It’s going to be tough to leave here, however. It’s that feeling of “ ten minutes after I leave something is going to happen and she will need me.” Life has shown that it is rarely as bad as the mind makes it, but it’s a human thing. I am so glad that Kathryn is here to watch her, and I am also a bit envious of her because the next week she is going to see changes in Karen that I have been hoping for. It will make returning on the 30th that much better, though.

Speaking of wondering about the useless, I wonder if the White Turd will start. I have not seen that little heap since the 8th. I am sure that it is still there, but I hope it will run. (Isn’t my faith in the mundane inspiring? I am sure Karen is going to be fine but I doubt that a GM product will start after 9 days in a parking garage. I am truly warped.)

Enough for now. Kath- ( you know what? For years the Kepkes have written Kathryn as K1 and Karen as K2 and when it comes to typing, that makes sense. I have yet to type ‘Kathryn’ without screwing it up. From now on she is K1. How’s that work for ya? Really? Tough. I’m doing it anyway.) K1 is taking a nap.

Talk to you later!


Thursday late night-evening

Hey everyone. My first night with Karen was a challenge for me. I tried my best to get used to all of the hums, churns, and bell sounds to get some sleep. I finally was successful around 3 am. I dozed until then. I did much better when Karen was asleep –evidenced by a little snoring. The only time I like to hear that sound. Karen had her best night so far. She was able to get to sleep for an hour at a time on average. A big step compared to previous nights. The unfortunate always happens. She is not awake to push the pain medication, then wakes up with pain then it takes 45 minutes to an hour to get back to sleep. We were able to turn her on her right side in the middle of the night and that gave her her longest sleep (1 ½ hours) We were awakened by beeping sounds from the pain distributor. I ran to the nurse’s station, because Karen was not awake yet- hoping to get the thing to shut up quick. By the time I got back she was awake –darn! Sigh – it doesn’t seem to get better. Her nausea was much better. No complaints for that at all. Her main complaints were not new. The left chest tube was the worst culprit. Her throat the next. Only one gas complaint. We still don’t have “passage” yet, so we hope to accomplish that goal today by walking. She kept thanking me for being there and commented on how wonderful I was. I got fairly slap happy and got the giggles around 1 am. Unfortunately, Karen got them too and that was her only complaint about my care!! I am not suppose to make her laugh.

More gas pains this morning. The PICC is a go. They have changed her over to it this morning. The central line will be out “sometime” this afternoon. They like to use that phrase a lot it seems to me "sometime". No tubes out today. They are still too productive. We should see Dr. Sugarbaker around 9:30-10:00am today. I will stay here until he arrives, then go to the room to take a nap.

I now must seek food.

See ya!


Thursday, November 17, 2005

Thursday Evening Late Edition

November 17 Evening

What a day we have had here. After a crappy night of monumental proportion, today has been downright enjoyable and you know, I am glad to say that. I have not reviewed what Kathryn has been posting so please forgive my overlap if that is the case. She is new to the posting deal but I am sure she will hit her stride shortly.

As many of you know, I will be leaving DC on Saturday morning bound for Palm Springs to see the guys. The plan right now is for me to be home until Wednesday the 30th when I will come back here and stay until Karen comes home. I will blog from home but it will fall to Kathryn to report the good stuff so I ask you to be as gracious to our newest staff blogger as you have been to Mark and me.

Tonight a lady came to put in the PICC line (formerly reported as an IPP line – acronym unknown on that one!) The PICC is going to replace the central line in her neck as the central lines have a propensity to get infected and the PICC is much neater, apparently. The catheter actually ends up in about the same place as the central line, but it is run through her veins from her arm and across her chest. It was a little surgery with gowns, masks, hats and the whole shebang. It took about 30 minutes to complete and was interesting to watch. It started with numbing the area on her are where the line was to enter, and then using an ultrasound machine to observe the vein inside. Once isolated, she put in a large needle thing with a tube and then fed the catheter inside that needle into her vein. The little catheter was pushed into the veins and it was hoped that it followed the right path to where it needed to be. There are lots of side veins that can interfere with the path of the catheter, and on the initial installation the catheter took a northerly turn and headed up towards her ear. She could hear it in her ear moving around, and when the tech flushed the line with saline Karen said that it sounded like a stream was in her ear. So the tech put a high pressure flush into the line and basically pushed the catheter back to where it should be. Then X ray came and it should verify that the placement is good, and then the IVs will be moved from the central to the PICC.

Walking was fun, and she covered a good 50 feet at 6” per step. It was a great start and although a tremendous effort at the time, it seems to have energized her somewhat. Tomorrow she will walk at least 3 times and that should really get the intestines moving around and hopefully launch several air biscuits.

I am off to the hotel for laundry duty and to sleep in the bed. I hope that Kathryn has a good night. And for those of you wondering what a “poor mad sandwich” is, you may know it as a Poor Boy. That’s Kathryn’s special east coast interpretation. Good Stuff!

Later, all!


Thursday evening

We have had an eventful afternoon. -all good! After a long awaited "bath" Karen sat in a chair She was told she had to walk before she was allowed to go back to bed. They never gave us a time frame for that - which frustrated Karen (and me as well) who was tired of sitting after 1 1/2 hours. She also was told to do her breathing treatment every 1/2 hour with 10 inhales with teh goal of reaching 1000 (Mark , I put that in for you!) while in the chair. THe whole time in the chair was without oxygen. She dozed in and out. She was able to accomplish her breathing goal about 50% of the time. After a 2 hour sit she then got to walk. This proved to be quite a process of pinning the JP tubes to the gown, getting the chest tube drain portable (I got to carry that), and getting a gown on her back (no mooning). She found walking extremely exhausting adn a lot harder than anticipated. Her goal was to get to the "atrium:" just outside her room to look at the fish tank. SHe got as far as -a normal persons -two steps outside her room and had to turn around. Nausea and exhaustion won over. She was really not happy she didn't reach to goal and stated " I would have done better if I wasn't so drugged up". I can see she will be motivated tomorrow. THe goal is to have her walk three times tomorrow and eventually sit in the atrium for awhile. NO promises about further tube removals yet. HEr pulse ox was so good after the walk- in the 90's they decided she won't need the oxygen anymore until bedtime.

Unfortunately, the gas is still and issue and no "passage" has occured even after the walk and long sit. We really hope it happens before bedtime so she can have a good night. It seems the pain is not as frequent, and Karen is not pushing her pain button as much either. Both Tom and I agree she is seems more comfortable with everything today. - even willing to have us leave her alone to get lunch for awhile.

She is currently getting her IPP - which is another -more comfortable way to receive meds, food, fluid, etc. I was kicked out of the room since only one of us was permitted to be with Karen and it is a 45 minute process. She seemed nervous about this procedure.

I hope to meet Dr. Sugarbaker tomorrow. I understand that Fridays are a "teaching" day in which he goes over cases with students and visiting doctors, and they come around and meet the patients . I really want to be there when he comes to Karens room. WE will make it happen.

WE were visited again by Tom's uncle and aunt and I appreciated their food and lovely sense of humor. It must be genetic! I had a poor mad sandwich with shrimp. It was very good and very filling!

That is it for now.
Catch you later...

tube report

Good news:
The gas pain seems to have subsided for awhile. Karen got her right chest tube out and her #3 JP tube out at 9:30 this morning. This whole process allowed her to get extra pain meds - this made her happy and sleepy. She tolerated the process well, and felt much better once the chest tube was out. She said she was so comfortable she was afraid to move. She also commented on the doctors through out the process. She asked the first doctor is he was married because his eyes were such a pretty green (she did clarify the fact that she was married as well) She then asked if I thought the resident had nice curly hair. I agreed. The doctors got a kick out of it. Jane the nurse said she was distracting herself, but I know the truth. She wasn't voted most flirtacious in high school for nothing! The sun finally came out after an evening of heavy rain in which I had to walk in and tolerate a 2 hour shuttle ride. I was very glad I wasn't driving . There Sure are crazy drivers here. I lost count as to how many care horns blared at us and how many our driver adminstered himself. Karen rested a lot this morning _YEAH. She managed to watch an entire movie at lunch. She is expected to walk later this afternoon. Tom went back to the room to crash. He came back around 2 pm.

Not much else. Now that I know how to post a blog properly you should hear from me more often.

November 17 Morning Edition

Did you get some sleep? Good.

I think that there must be some kind of rule that you can’t have two good nights in a row. After the cramping/gas/belly pain last night subsided at about 1:00AM or so we settled down to wait for the Xray. We waited and waited and I checked with the nurses who said that since Karen was now resting comfortably that they had changed the status of the request from Stat( urgent) to WWGT ( Whenever We Get There) . This caused some some sincere pissing off on my part. We hadn’t seen a doctor or the nurse since the order was placed, and now nobody knew when the Xray was showing up. What, I demanded, was a STAT if it could be changed???? The nurse who is on this ward tonight is basically by herself and stretched very thin but dang! So we sat and waited until 2:00AM or so and I figured that there was one sure way to make the Xray dude show up, and that was to get Karen really comfy, turn out the lights, and try to get some rest. We went through the ritual of pillows, ice, blankets, socks, and positioning for Karen and then I eased over the little couch and settled in.

Sure enough, soon down the hall came the sound of Xray dude and his sidekick The General (Electric). In came he and we had to wake Karen and jamb a nice, cold plate down behind her back for an Xray. Hoo boy I was in a good mood then I can tell you. After he left, Karen decided that she wanted to lay in a position on her side so we went through all of the ritual to set that up. After placing her there I turned down the lights and crushed the little couch. I had pulled the little blankey over my chest and was dozing off when I heard the call: “Tom” It had lasted 12 minutes. So we removed the blankets, pillows, etc, and replaced her on her back with a little tilt up for her head. By 3:00AM we were quiet and dark and wondering where the doctor was. The cramping thing was gone by now for some time but still . . .

The resting bliss lasted until 4:45 when Karen awoke from some kind of doze to find her throat hurting her. The NG tube is rubbing her throat raw and there is very little that can be done about it. So it was catch up with the pain meds again.

Then, without warning at 5:30AM the cramps started again. Just like before. At about that time the same doctor that we had not seen all night shows up and says, “Are you still having pain?” Duh! That guy left, and I don’t miss him at all.

So this morning the usual team showed up and reviewed the Xrays and have good news. They saw some air in the bowels and say that it is normal, and that the bowels are indeed waking up. It looks like it’s a big gas bubble. Gas! That’s actually great news and several things should happen today:

- The Gas should find an exit, and she will feel better immediately when that happens
- The Central Line is coming out, and the PICC line is going in.. That will be more comfortable.
- The right chest tube may come out! It has been underproducing and therefore it’s job is being outsourced. Too Bad!

The better news is that things are right on track for the bowels to wake up, and when that happens we get gas, and then when the bowels actually start to produce some . . .items, the NG tube will come out. That will be a great thing.

So after a hellish night we are in the daylight again, and the news is good. This kind of harkens back to the words of that great philosopher, Rafiki, who said, “ Ahhh. Change is good, but sometimes it can hurt.”

Today there is some sitting in her future, and some small walking steps.

Thanks for all of your prayer last night, and it has worked fine. The immediacy of the pain was a scary thing.

Pray for some nice toots. Dan has prayed for pee with us before, and that worked!

Kathryn bounced in this morning all dressed up in a nice sweater, jeans, pretty hair and earrings. I must have looked at her like she was from Mars and I said, ‘ Look at you all dressed up!’ She smiled and said that she will be in sweats in no time. I should have brought a suit. Talk about underdressed.

And this just in – We know how we got the killer suite! We finally met Jane, the nurse who Tim Pierce, or friend and former Sugarbaker associate told us about. She has been gone for the week and this is her first day back. Well she charged into the room this morning and laid out a great plan for the day. It is going to be a good one. And then she said, “do you like the room?” Turns out she was calling and calling and calling last Thursday and Friday to get it set up for us, and it sounds to my weary ears like she may have pushed a few extra buttons to keep us in ICU a little longer until this room came up. Way to go Jane!!!! It’s who you know, isn’t it?

Enough already. I’m pooped. ( get it? ) And a bit slap happy. I’m going to sleep on a bed for several hours. And when I wake up, things will have progressed.