I'm Home

I wanted to let you all know that I was discharged this afternoon from Spectrum. They removed my PGJ tube at 8am. They removed my PICC line a little later, so slowly I was getting rid of all the extra tubes from my body. It felt great. I am still quite painful. They explain it to me that all my body has been through, it is just not going to react to the pain meds like it used to. I feels good to be able to eat again, even though things don't taste quite the same. I'm sure that will change with time.


Thanks for all the prayers. This time when the Dr. said I would be there 5-7 days after surgery, it came true.........

Hammers and Pajamers

Stan Here:

I was thinking a little the other day.  Not sure why I want to announce that now but just wanted you to know I was thinking.   Somehow the topic of wimpy and non-wimpy things was on my mind. I think a guy walked by with a wimpy dog.  I kind of reminded me that we once had a dog like that and  kind of wondered if people thought "who is that guy with that wimpy dog walking by?"  when I would walk the thing.  Another thing I own that is kind of wimpy is hammers.  Ever see a real carpenter use a hammer? They bust a nail about twice and it is in.  I looked this over one time and figured out that the reason I could never do that is that the hammers I own are kind of wimpy.   I also have had this life long thought that the idea of mens pajamas is by its nature just kind of a wimpy idea.  At least that way I have never had to remember to pack pajamas when I travel.  I think Buicks are kind of a wimpy car.  I don't have a good reason for that. Just kind of have always felt that way. They are kind of a Christian car though.  I always see quite a few of them at churches.

Anyway I was sitting here at the hospital in the chair next to Deb's bed. She is sleeping right now. It is Sunday afternoon.  And I think what I want to say in case you have not figured it out is that there just is nothing wimpy about any of these events that have taken place over the past 1 and 1/2 years since this cancer was first detected.  I am kind of in a reflective mood. I just looked and there have been 271 postings on this blog.  Mieke talked us into doing the blog. She thought it would be better than repeating the progress reports. But I do not think anybody could have thought that there would be 271 times that some sort of posting would be needed to report the various events. I did not go back and read and probably a few of them did not have with them medical news but most did.

Have just now been recalling how this whole thing started. Deb and I were on a trip to Wisconsin in August of 2011 and someplace along the way she started to report some discomfort in her midsection.  By the time we were on the way home she was very uncomfortable.  She had a doctor appointment sometime the following week but somehow arranged to have an ultrasound on the Monday we came home. By the time it was noon the phone was ringing and her doctor told her we have some big problems.  It was just amazing to see how fast many decisions, operations, arrangements, recoveries, medicines and everything else came upon Deb.  I have mentioned that Deb is now recovering from the 6th surgery related to this thing and these are not the puppy variety of surgery. In fact they have used the same incision now 6 times and the recoveries from this is not getting easier. It is the other way around.  I counted up and last year Deb was in the hospital for 84 days (I think 2 weeks of that was in a recovery center).  The toughest event I have seen was her battle with severe intestinal infection that followed one of the surgeries.  That was last spring and that was one of the the scariest medical events I have witnessed (That was when Deb had to put in a medically induced coma for about a week). Most recently enduring the nausea that came with long hospital stay and return home was very difficult.

So I started talking about wimps and wind up talking about the industrial version of this and right now I just wanna tell you I am of glad I did not marry a wimp.   No reports yet on when she can come home.  She had a really tough day yesterday but seems much better today.  The good money is for her to come home sometime this week.  She is kind of anxious to eat something again.  She got halfway through a banana today which is the first thing I have seen her consume in a long time.  Now they brought in some more food. One of the things looks like a Swiss steak.  So maybe things are getting there.  She was thinking her taste buds were going to sleep but I just went over and tried a piece of this thing and it must have come from the land of bland. 

Anyway that is the news.

Stan

Slumber Party with Leah

My parents took me for a little ride in a W/C today. I had to see their room at the Hospitality House and then I wanted to see my friends who were in the waiting area for relatives having surgery. Their room was very nice and they even had a free taco supper tonight. Kent DeJong is the son-in-law of our friends and former pastor Dave and Linda Breen. Kent's wife babysat for Mieke from the time she was born for many years and was a juniour bridesmaid at her wedding so she is very special to our family.

They thought Kent would have to first go to ICU and then come down to my floor, the GI floor. Surgery went so well that he got to be transferred from the recovery room to the 7th floor. This hospital is so full, that unfortunately Kent didn't get a private room and has a room mate. Leah had promised Kent she would spend the night.They are two rooms down and I invited Leah to sleep on my pull out couch for the night. That way she can visit him as much as possible and feel better about leaving him.

Ross and Rumy stopped by here before the symphony. Mieke came right from her newly organized classroom and then Alden and Mary stopped. It felt good to have all my little chicklings under my wing. My parents went to the symphany, will stay here again tonight and will come spend a little time with me before they head for home. It sure has been nice having them here to care for me. Stan is going to come all day tomorrow.

I did have some clear liquids today. No nausea which makes me happy. I am taking it very slow with the food.  I am having a little fever tonight and I pray that is nothing.   The stoma nurse is quite concerned with my new stoma, it is flat and it is going to be very difficult to fit an applicance to it. It will tend to leak, but in keeping with my new attitude I am trying to keep an open mind to it and taking all the advice she can give me.   Good Night All!!

1st Post Op Day went WELL

Aside from having quite a bit of incisional pain, this day has been good. I am so glad I have not been nauseated.  My parents have been keeping me company and helping me all day with all the tubes, IV's, PCA pumps, etc. They arrived right before they took me back to the OR. My Mom forgot her phone charging at home, so she was very surprised that instead of being finished and coming out of the OR, I was just going in. The Drs. were very pleased that I didn't have as many adhesions as the last time. Instead of surgery taking 3-4 hrs, it was only 2 hrs and 15 minutes. They reattached the ileostomy and they also took quite a few biopsies. Ross came to see me in between his rehearsals. I was in the recovery room and my Mom talked them into letting him get to see me in there. I was very painful the whole time in the RR. They have got a bit better control now with a dose of Dilaudid every 3 hrs and a Dilaudid PCA pump. (Patient controlled Anesthesia).  I have had very nice nurses who have been coming in with my meds on time, which is so appreciated.

I wanted to tell  you about this wonderful service they provide out of town guests. My parents could stay at this lovely Hospitality House connected to Spectrum. For $25 bucks and if they were full, they would give they a discount at the close by Holiday Inn.

The good news is that my ileostomy is already putting out some stool, which means things are going well. No temp which is also great news. I did not sleep very well last night even with an Ambien, so I am feeling pretty tired now and expect to get a better nights sleep. I am very excited to have this surgery  done and and looking forward to recoverying. Good Night Everyone.

Just the Facts

Stan Here:

Surgery is over, Deb is alive, she is sore, but she is in her room, Able to smile some, talks a little softer but looks pretty good considering everything. We have had notes from many, prayers from many and Deb has been able to feel that. Thanks for all of your kindness thoughts and prayers as we now face the process of recovery. We have been told 5-7 days here if all continues to go well.

Surgery was delayed 2 hours and the one little story I have from this day is that right before the whole thing started Deb went down to the gift shop with her IV pole. She went right for the baby stuff and spoted a little pink outfit. On the front of that thing is said "If you think I am cute you should see my grandma". so even in facing a big deal like this she has her eye on the future. Mary and Alden are having a little girl in June and my money is on us reacing that day with her Grandma feeling a lot better than she does right now.

Stan

2 hour Delay

Stan Here:

You all see on the morning news when there is fog or ice that the schools have a two hour delay. Some of you who are waitng for the results of the surgery will want to know that everything here was moved back a couple hours. Start time for surgery is 2:30 now.  It is expected that the surgery will take about 3-4 hours.  Will post tonite when we know the results.  Deb seems to be doing fine and does not even  seem all that anxious about it all.  If it was me that would not be the case. And that is a fact.

"Twas the night before surgery...

Quick update about todays events:

The colonoscopy showed that I have a complete obstruction at the site of the last surgery where they did the anastomosis.

I now have another PICC line placed in my arm and it hurts! I think it is placed very close to a nerve and I hope that feeling goes away.

I just watched MSU lose in basketball :( Great game though.

I did have two handsome visitors today even though it was terrible weather out. Stan and Ross were up here around lunch time. Ross drove in from Lansing to play with the GRS for the 5th graders , but because school was cancelled, his event was cancelled.

I thank all of you who have sent me your kind words of support and prayers for surgery tomorrow. I hope I can sleep...

The Spectrum of the Rectum

Stan Here

Pardon the graphic title but that about sums up the situation.  After all of the work and discomfort it would appear that things do seem to not want to work, so we are back at the Spectrum Hotel.  Turns out after some test that there is an obstruction that will prevent the goal of having things ever return to total normal again. It looks now like they will have to reverse the reversal and have Deb live again with the ileostomy bag. Bluntly stated this has been a blow, but life was never any good with all the stuff that needed to be hooked up at home. At the risk of sounding redundant the original surgery was done on November  27 and after 49 days here a bunch of procedures and trys at various soft foods  nothing really ever did work. Deb also has endured some severe bouts with nausea and pain with her stomach tube. Last week on Thursday they did a small bowel follow through and then Friday they confirmed that nothing was moving and an obstruction existed that would have to be surgically treated.

So the dilemma was the fact that Deb may not have many surgeries left in her and if they tried again and things did not work, then we might have some real trouble.  After some deliberation we decided that the best course was to use her potential "last surgery" to have this done. It was just too risky the other way and very frankly this one is not without some risk.  Adding all this up she has endured 5 surgeries now and Wednesday afternoon the 6th and the human body is only able to stand so much.  Although we did start to hear some stories about people that live till the end of life with TPN feeding this is one of the bigger pains in the rectum (I cannot think of the other word for that) but just trust me it was not the way to go. I am just good and glad she is a nurse cause hooking that up and all the meds that go with that was an act of congress as far as I was concerned.

While it is true that nobody wanted this, it is also true that the quality of life was better with that than anything she has endured recently.  So there you have it.  I still hold out some hope that some how the colonoscopy they will do Tuesday would somehow solve the problem but frankly that is being done to pinpoint the point of obstruction and nobody is talking that it has little if any hope in magically freeing things up.  All of this is kind of sad, but those of you that know Deb know that when she faces a problem she does what is best in her power to make the right medical decision. We could actually complain a little more but I do not think it will do much good at this point.

Deb is actually in a chipper mode right now as this decision is made. She was driven here today by a friend as I had a business commitment. (thank you Deborah)

Deb Here:

I arrived at the hospital around 1pm and was admitted first to a lovely room on the 9th floor with a wonderful view of GR. The floor is call the admission floor and it is only open from 11a -11p. It is for patients from the ER that need to be adm to a floor but there are no open beds. They go to this floor until another pt is discharged. So that is where I was until 7pm when this room on the 7th floor became available. When she wheeled me onto the floor I was greeted warmly by the staff who all seemed happy to see me, but a bit sad for the reason I am here too.

I am NPO after midnight and have my colonoscopy with Dr. Figg sometime tomorrow. My surgery is scheduled for 12:30pm on Wed.

I was glad to be able to attend church yesterday for the first time since Nov. Everyone seemed happy to see me, and said I looked good and they were happy I was doing better, and then I had to say, but.............

Will post tomorrow night with the updates. Here I sit with my SCD compression stockings going off and remembering only too well what is coming. Thanks for all the emails and calls with support and prayers. Love, Deb

Guess What I Get to Look Forward to???

I spent all of Valentine's Day at Blodgett Spectrum Hospital having an Upper GI with small bowel follow through. It was not fun, it was a long day and I had a lot of cramping discomfort with all the Barium they injected into my small intestine. The barium didn't move past the small intestine. They had me return this am for one more picture just to make sure it wasn't maybe moving very slow. But, they said it had not moved any further at all. This means that I have on obstruction. This really didn't surprise me because how I have been feeling and I wonder how long the bowel has been this way. I don't have a lot of confidence in CT scans, which they kept saying looked good.

I got a call from my surgeon today and he said that I will be getting a call on Monday morning with the details, but that I should plan on being admitted to Spectrum that day. He was going to talk with Dr. Figg who is a colo/rectal specialist and see if he would want to do a colonoscopy first to find out exactly where the obstruction it. So the question is what surgery are they going to do?? Do I have them try and fix the obstruction and have to wait again to see if my bowels work?? and then possibly have my body form scar tissue trying to "fix itself" and have another obstruction form? I only have a third of my lg intestine left. I know that they would have to move the reattachment back further done from where it is now and that means a greater chance of living with diarrhea.

Stan is having a hard time understanding this, but what the Dr. recommends and I agree is that they give me an ileostomy again. I can at least live a fairly normal life and eat again. I hated it when I had it, but I always thought of it as a temporary thing. I now know that there can be worse things and that is how I am living now, not eating, having a very uncomfortable decompression tube in my gut, vomiting frequently and being attached to an IV for 12 hrs a day.

Stan says that if we reattach the ostomy again then all this since Nov. has been for nothing. I disagree because we tried. I never would have been content if we had not tried to reverse it. My attitude toward it will be different. You don't appreciate what you have until it is taken away, like your ability to eat solid foods.

I know so many of you have been praying for me and I thank you so much. The cards and emails are so appreciated. Please don't stop because I will need all your prayers and support with this, hopefully my last surgery.

New Pope, Some Hope

When I opened my eyes this morning I heard on the news that we might get a new Pope.  Stan said the last time a Pope retired was some 500 years ago. I think that is around the last time I had anything to eat so I guess I did not think it was all that big of a deal. I did have an appointment today so I had to take the Pope news in stride and get on with business.  Stan has quite a few Pope jokes and I suppose I will have to hear some of those again.

Just got back from my appt with Dr. Scholten, my surgeon. He is happy that I am maintaining with the TPN and the gastric tube. He does not know why the bowels have not woke up, so he wants me to have an upper GI with small bowel follow through. This will check if my stomach is working,and emptying in the small intestines, etc. I think he does not know what else to do for me, so he is passing "the problem" on to Dr. Figg who is a colo/rectal specialist to handle me from now on. He says I can try putting something more gentle into my jejunum (sm intestine) like Pediolyte, or Gaterade, basically sugar water if I wanted to, rather than the formula. He said until we get the results of the upper GI, it really doesn't matter if I continue trying the feedings or not. The area around my G tube is very sore ALWAYS and I thought it looked a bit red and infected, but he didn't think so. So I guess, that is one thing I just have to get used to.

The concert Sat. night was wonderful. It featured a Beatles imitation group backed up by the symphony. I was not exactly sure how to handle my TPN feeding that evening because I usually start it around 8pm and it goes to 8am the next morning. We weren't going to be home until around midnight and that was a bit late, so I tried something I had never done, I started it when we left around 6pm and I put it in the backpack and carried that with me the whole night and I don't think anyone knew the difference. Ross did GREAT with his Penny Lane solo, in fact he was acknowledged to stand and was given a very nice applause for his efforts. We were proud.........
It was also kind of fun the hear all the Beatles songs again.  I think I have tried about everything to get better but I have not got down to the medicinal marijuana yet.  I better keep that off of the list but I think it worked for the Beatles cause they sure did write a lot of pretty interesting music.

That is all the news I can think of from this yellow submarine of mine

Deb (with a little help from my friend)

Breeding, Tubefeeding and Greeting

Stan Here:

Probably guessed it didn't you.  Just cannot resist a little rhyming and chiming with this post.  For potential first time grandparents this was kind of a big day for us.  Alden called and told us that an ultrasound told them that the baby they are going to have is a girl.  As far as I know there are only two options on this one and we will take this result. Perhaps for us, given some of our history, there was some concern. Some of you that know our history know that Deb and I had some real problems many year ago in losing 3 pregnancies to Potters Syndrome which is a genetic disease that results from the lack of kidneys in the fetus. The concern was that somehow this might somehow pass to our children.  But the ultrasound showed plenty of fluid and what looked like a kind of nice looking girl who was thinking she might come out around June 20.  I started playing the name game today.  I texted Alden and thought of this kind of neat name "Teeka".  He texted back that he thought they might name the baby themselves but until they get that done I can announce that Teeka is going to be a very welcome child in this world.  Free Babysitting at 1133 Silverstone.  Just in case they did not know.

So much for Teeka, on to Mieka, She was kind of proud to be selected today for a new assignment.  She was picked today to teach full time in a 3rd grade class in the school she is working in now. Most of you know she took a position there as a para-pro at the start of the year. She had been offered a few jobs around the country but elected to stay in this area where teaching jobs are tight.  So today she was selected to teach a third grade class for someone who was on pregnancy leave till the end of April.  So she goes full time and I think that is what she wanted. I feel good for her and I also feel good for the kids she will teach.  I have reflected in the past that she has a real passion for this and now she gets her shot in a school she likes.

Ross plays this week for the Lansing Symphony who are doing a concert with Beetles Music.  The lead guy is not feeling that well and asked Ross to play the lead on "Penny Lane" which is one of the more demanding pieces in trumpet literature. Deb and I have been married 38 years on February 8. Since she cannot go out to dinner we are gong to Lansing to hear this concert on Saturday. It used to be that we would always be a little nervous for something like this, but I think these days have past so we are just looking forward to this.  The Lansing Symphony is a fine group and they play at the Warton Center on MSU Campus.  We are looking forward to this as getting out has not been on the agenda all that much. It is kind of a big deal because a lot of medical stuff has to go along and be thought of for a trip like this.

Anyway, with all this good stuff we did have one thing that gets our attention.  One of the critical measures in this whole cancer game is the CA125 count and that was up some to 89.  We had been warned that it might be up some but it was high enough for the docs to order testing of this in a month rather than in three months as ordered before. Not a huge alarm but enough to get our attention.

The tube feeding for Deb is having some problems. She still has some severe problems with nausea and vomiting and has tried so hard to get that all working like we expected.  At the same time she is sick of sitting around and now she is going to just gut it out and get out and wait it out for some more medical direction. She has some more appointments next week to perfect the whole deal and that gets me on to the greeting part.

She came along last night to a class I have been teaching at church.  The greetings were emotional and warm and for the first time in many moons she is out wandering around again.  Not always all that easy but it beats all of the alternatives.

Send me some good girl names and I will forward them to Alden.

Stan

Saw G.O.D. today..........

My oncologist's name is Gordon O. Downey, so I often say, I have to go see GOD today, and that is exactly what I did. My parents were here for the weekend, stayed overnight after watching the
Super Bowel game. They dropped me off on their way home. We did get a chance to stop for a little while and see my sister who is here from Tulsa, helping to care for the new addition to our family, little Charlotte Mary Jane Dozeman. Becky Dozeman is Krista's middle daughter who lives in GR and had her little girl a week ago. She is darling and Great Grandpa and Grandma V. were very happy to meet and hold her.

The visit went fine, I had an exam and he said the CT scan was clear, but he did remind me that woman like me, 75% of them have a reoccurance of the cancer. So he just wanted to remind me of that fact. They drew my blood and I find out the CA-125 tomorrow. He expects it to remain normal, but would not be suprised if it is up a bit, because of all the stress from surgery.

I called Dr. Scholten, my surgeon's office today to hear the results of the CT scan as far as they were concerned. They report that it looks OK, nothing to suggest that there was a blockage. So, I am now hooked up to my tube feeding which is pumping Boost Formula right into my small intestines, hopefully trying to stimulate them to wake up. I start out slow, like 10ml/hr and increase it my 5ml/hr per day until I am up to 45ml/hr.

The good news is that last Thurs. a few hours after my CT scan I did pass a couple of times a small white formed Barium stool proved to me that things can go all the way through and I was very excited. But, I couldn't stay happy for too long, because with all that barium in me I felt awful for a couple of days, until I vomited a whole bunch on Sat. am and then started to feel, much better.

I know this is just TMI, too much information, but this is what you all have been praying for, I know. It is weird having so many people praying for my bowels, but please don't stop, because I would really like to start eating again someday soon!!

Stan says I write these blogs way too medical, but that is the only way I know how to explain it.
The Dr. asked me today, How are you doing emotionally??  I said I think OK. I am starting to figure out this may take awhile, and I can't stop living. To sit home in my recliner and feel sorry for myself that I can't eat won't work. So, I am going to try hard to start living again, and do it around my TPN and tube feedings. It means a lot to me that so many of you are thinking and still praying for me, sending emails, cards, texts and visits. I am not nearly as nauseated anymore, so I am ready for company.   Love, Deb