Christmas Letter 2013

Hi, Stan wrote a Christmas letter and we sent it to some via email. Thought some of you would enjoy it. I thought I would add a little medical info for those who might be interested. I am having chemo once a month and they tell me it will be that way forever. Two days after chemo I go into the GR office for a shot, part of the clinical trial. My CA-125 count is hanging around 88, and they wish it would go down into the normal range. When I have CT scans they say the tumors are not growing, but staying the same for me is good, so we stay the course. The Ct scans and chest x-rays are every two months, and boy do they seem to come around fast. I still struggle with the ileostomy. It is not fun and I wouldn't wish it on my worst enemy. I am thankful to be able to work "on-call" on the birth center and teach childbirth classes once a month. I love watching Ainsley on Weds. and she is getting to know her Grandma. Thanks everyone who continues to remember us in prayer.

Christmas 2013

Dear Family and Friends,

It only took one person to say “remember when you used to do those Christmas letters? I used to read them and sort of remember a few of them”.   Plus we received a number of nice letters this year from friends and relatives so I asked Deb this morning if it would seem cheap to do something online.  I sort of worry that it sends the message that we are not willing to invest the 45 cent stamp and the time to send out something.  Most of you know, however, that energy levels here are not always what they used to be so trust us that this greeting has none of those thoughts.  Instead the desire to communicate a Christmas greeting and some update on what is going on in our family.

It would be hard to put some of this stuff in order.  Some of it goes together.  Some of it has to do with survival. Some with hope. Some with joy and all the rest.  The best way I can explain this is in the fact that we were blessed with our first Grandchild “ Ainsley Grace” born to Alden and Mary this past June.  She is sort of the “star of the show” when she does show up around here and I must say we have all been having some fun with this.  All she has to do is sit in the middle of the floor and make some sort of noise or crack some sort of smile and it is like the Lions win the Super Bowl.  I really do not think Deb ever thought she would make it to see this day and it is this element that adds a special part of joy and to this whole deal. Deb takes care of her one day a week. Our other children have also responded to the joy of this event in a fine way.  Most importantly though, our family has been blessed with things to look forward to, some trips, grandchildren, some new jobs and a few other things to help us concentrate more on the task at hand rather than the very tough elements of dealing with our main issue of Deb’s cancer.

Speaking of that let me give an update.  At one time I wrote that we figured out that this type of cancer is never really conquered, it can only be endured. So yes there are some issues with all sorts of things.   Last year at this time Deb was in the hospital for 49 days.  But since that time she has returned to work on a part-time basis.  Who would have ever thought it?  Still some problems but a heap better than a year ago and in this we strike new meaning to the word “rejoice”.

Mieke received a new full time teaching position this year in the 4th grade in Hudsonville.  She has a deep love for her students and it is my guess that if you have a kid in the 4th grade you have yourself a good deal if you have her for a teacher.  When she received the position she chose the theme “traveling through the 4th grade” and her dad “me” offered to write a story about a guy in the 4th grade who chooses to travel the country on foot.  The kids seem to like it so far and it is one little thing I can do for her.  His name is Blarry and his dogs name is Browser. I like writing so it has filled a need for me as well.  Mieke loves her job and that has meant all the checks made out to Hope College seem worth it.

Ross just took a new position of going on tour with a group called Axiom Brass.  They perform around the country and from what I have been able to find on line this should be a good gig for him.  He and Rumy seem to be doing well but they are thinking that a move to a larger venue such as Chicago might be in the cards.  They seem to really care for each other and they enjoy being married.  From what I have been able to figure out it was somewhat providential that they are together.  The type of life and work a professional musician must do could only be totally understood by someone in the same field.

I take a special pride in my son- in-law Aaron. He works now in the same field as I but just for a different company and he seems to thrive in this field. Plus he is the nicest human being on planet earth.  Mary, Alden’s wife is very relaxed with that grandbaby of mine. She works at Via Design and she is just fun to be around.  Rumy is a very hard working woman  and plays the piano in a blur of fingers and teaches many young children.  I had a friend tell me this summer “Stan you are a lucky guy”.   And on these fronts I agree.

At the risk of making this long I have a few more things.  We have what I think may be getting to be a special thing in our family.  All four of our parents are living and still able to enjoy life.  My mother and father moved to Freedom Village this past year and Deb’s parents are not running marathons but they are still doing good.  I enjoy doing some outdoor stuff with Deb’s dad.  They have some snowmobiles that he and I still use.  My dad gave me his whole library and I enjoy reading and learning from some of his things.  My mom seems to thrive at Freedom Village and they still have us for dinner at what I call the 5 star Freedom Village gourmet restaurant. Deb's mom seems to be in the best shape of them all. We enjoyed a trip with them to the U.P. this year.

It is December 24 and I am not sure global warming has reached us all that hard this year,  been very cold here.  Lots of snow as well.  But as they say the weather outside is frightful, but the fire is so delightful.  And that is what I really want to say.  There is still a fire over here.  It burns in the most interesting way.  Living parents, new grandchildren, survival, new jobs. All in all it is going to be pretty nice Christmas this year.

From the Stan and Deb and Gang.

Good Deals But Sore Heals

Stan Here: 

I just looked and it has been about 4 months since anything new has been on the blog.  On that last posting we said we would not put much up unless conditions changed and you know they have not changed all that much.  The counts all seem to be pretty good. Deb is still having chemo and it seems in between some test the results come in and they look OK. Even the rash that resulted from the chemo is not as pronounced as it was at one time but it is still there. Perhaps the largest problem right now is some pretty strong problems around the ankles and back of feet that prevent wearing shoes with any thing around the heels.  Now from a mans perspective I cannot imagine wearing shoes that had no back to them but I guess if this is the price it is not so large. We do have this collection of shoes around the house with fronts and no backs but they look pretty good, in my opinion.  Not really the kind you wear shoveling snow but the kind you wear when you need to tell you husband that you cannot help with the snow.

It seems that what we have found is that it is rare with the type of cancer Deb has to ever reach the day that  it can be said that the “cancer is behind me”.  But the fact remains that somehow this cancer can be endured and that is what Deb is doing.  She is working again and once that has been possible the calls are coming in pretty good and it seems that she gets all the work she can handle.  Her work has been very good for her and to her.  Plus the extra money here is pretty nice with everything that is going on.

Deb does take care of our granddaughter Ainsley one day each week and it seems that they have bonded.  It is hard to resist posting a picture of the “star of the show”. We had a great thanksgiving with the whole family up north. We spent some time sitting in the living room with a blanket in the middle and observing Ainsley playing with stuff and doing new stuff.  Somehow I kind of forgot how much fun it is to observe the progress of infants but I thought about selling tickets to everyone as they commented “look what she is doing now”.  I think many of you have been through this but for us right now it seems pretty special.

Pictures of Ainsley:

Gotta put on the P.A. the new CA

Thanks Stan for the title. I wanted to call it, "Time for the Happy Dance Again" but he said, that's too old. It also makes me a bit sad because my friend Tammy who taught me to do the Happy Dance passed away a few months ago. I can still see her grab my hands, lift me out of the chemo recliner and say, it's time to dance! I miss her, but I will never forget her optimism and zest for life.

I had my visit with Dr. Downey on Monday. The great news is that the CA-125 is down from 241 to 77!! I was prepared for it to maybe even go up, because that is what they often see when people are started on Doxil. He also reviewed the results of the CT scan from last week. The one larger spot near my gallbladder fossa is the same size. There are a few other spots that look like they have gotten smaller. So this is also good news. My biggest side effect from this drug (besides being tired) is a rash I have on my legs. But, they said, sorry you have a rash, but we think you should continue with this drug because it seems to be working. I agreed, and they gave me some meds to help with the itching. I still miss my "hot" things, but I am getting used to throwing some ice cubes in my morning coffee. So far, no big problems with sore hands or feet.

I have been able to return to work a little bit. I have taught three Sat. childbirth education classes and worked on the floor some. I prefer 4 hr. shifts, because I really am tired when it's much longer. It has been so nice to see all of my co-workers again. I really did miss them. Another nurse from our unit was just diagnosed with Leukemia, and has to be up at Spectrum for a month. We are all so sad and shocked at this news. Our hearts and prayers go out to Paula and her family.

That is the one thing that just seems to be a constant. the waiting room at the oncologist office is always full of new patients that seem to have the same look that my family and I had when we first were there. "Deer in the headlights" look and fear of what they have to go through. Aug. 1 was my second year anniversay of learning that I had cancer. I remember thinking, if I could just have another year or two, that would be so wonderful. Well, I got that, and I am thankful everyday that I have been around for so many wonderful things, Ross, Rumy, Mieke and Aaron all graduated, their wedding, the birth of my darling little grand daughter...and so many other wonderful moments with family and friends. I don't take any day for granted, I look at them as a gift. I was happy to have another birthday.

I am having lots of fun helping Mieke decorate her new classroom in Hudsonville. When Stan saw the picture her principal took of her signing her contract, he said, this makes all the tuition to Hope College worth it!!

Every thing I read about living with cancer says that you need to be hopeful. This was in a recent email:

• Be true to yourself. Make sure that you are doing activities and involved in relationships that keep your sense of self and identity separate from your diagnosis of cancer. (working and teaching help me feel "normal")
• Stay connected. Both formal and informal relationships provide a positive impact on your life. (girlfriends, PEO sisters,family)
• Set goals for the future. This will give you a sense of power over your own health and well-being.(I need to add a few more things to my bucket list)
• Find ways to give back. Use what you've learned to help others. (I hope to start doing Kids Hope again and volunteer at church more)
• Stay in touch with your spirituality. This is defined by your personal sense of spirit and may be religious or meditative in nature. (Keep believing in the power of prayer, attend a Bible Study and keep daily devotions a priority)

Stan just left for his golf league. He is not happy with how he is playing this year. But he still enjoys the guys and being out in the fresh air. Our garden up north is starting to really produce. If anyone needs zucchini, let us know!

I you want to see a little of Rumy in Bulgaria at their concert. Go to You Tube
Rumyana plays Rachmoninoff     It is amazing, all for memory too.
http://www.youtube.com/watch?v=XZUQw0bWkRU&feature=share

To see pictures of Ainsley Grace: try this site:
http://www.flickr.com/photos/35538699@N04/

The Sog in the Blog

Stan Here:

Being up and down the streets of our town I have heard several comments and questions about why no more postings on the Blog.  In other words a noticeable sog in the blog.  Well here is why.  It has been sort of a goal around here to reach this point.  So no news is good news as they say and for the most part there has not been all that much news around here lately on the the health front.   But now I have a couple of things I should post.

It is Saturday.  Temp outside is around 72, wind is not blowing and I think if you had to look for a word to describe the day you might try to find a word something like pristine.  And inside of that word we have a couple other things I just have to tell you.  Some of you know that we have been blessed with a new grandchild and tonight we have the burdensome task of needing to visit her and take care of her for a while so Alden and Mary can attend a wedding.  I know this is going to be a tough one.  But I think we can do this!!! I know it is so boring for people to talk about their grandchildren but it seems to me that as these things go we have got a good one here.  She is a couple of months old and she can even muster a smile.  She kind of frowns at me but when Deb holds her she smiles.  I can handle this.

Plus we picked up Ross and Rumy yesterday from a three week trip to Bulgaria.  They had sort of a interesting thing happen.  They got stuck in Vienna (sp) for a day because of a late plane.  Now for two musicians to get stuck there is not a bad deal.  It was kind of touching to hear them talk about this.  They visited the home of Mozart. Both Rumy and Ross have such a deep appreciation for music that when we picked them up Ross reported that a few tears were shed as they toured his home.  I think that for many of us we cannot understand this all that much but somehow for them this event stood out and meant a lot to them.  Ross talked about it all the way home.

I have one other kind of fun thing to tell you about.  Mieke received a teaching position in the 4th grade at Hudsonville.  I think I have reported to you before that she has such a passion and love for teaching and children that whoever gets her will be lucky.  So she and Deb cleaned out our basement of all of the stuff she has stored to set up her classroom and they loaded it all in the car a day or so ago and went to set it up.  So I get a clean basement out of the deal and some kids over there get a good teacher.  I am writing a story for her. Her theme is A Rode Trip through the forth grade.  So I am writing a story that she can read every day about the adventures of a guy by the name of Blarry McGlary who travels on foot and visits every state in the USA. I called her last night to see if she could use this.  They teach about the USA and the capitals in the forth grade and you can be sure this guy is going to all of those places and that he will have some adventures along the way.  Should be fun.

Now I just put some birdseed out in the backyard.  And sure enough I have this Pileated woodpecker who jumped on the feeder.  For those of you who do not know this bird it sort of looks like Woody the Woodpecker.  Not sure why this is all that significant except to tell you that the red head reminds me of one other thing.   While it has been true that the medical events around here are somewhat calmer than in the past, it is also true that recent times have not been trouble free.  As a result of the chemo drug that Deb is now taking she is suffering through a pretty strong rash.  She is teaching a childbirth education class today at Holland Hospital and she has been able to work a little this week but I could not help but feel sorry for her when she left this morning.  When she was started on this chemo drug she was told the the side effects would have some of this and this has been kind of roaring in these past days.  Only she could blast through this without complaining all that much, but I must tell you that if it was me this thing looks like it has to hurt.

She and I went on kind of a nice trip to the UP with her parents this past week.  I had never seen the Soo Locks or the pictured rocks and we did both of those things and more.  On the way back she had to have a CT Scan and some X-rays in GR.  We get the results of those test on Monday when she sees the oncologist and she has more chemo.  So if you are a praying person if you could put one in for us I would appreciate it.  We are hoping that the test will show further reduction of the cancer.  She also still fights pretty hard with issues surrounding her illiostomy so I do not want you to think we are totally in the clear.  I do want you to know however that life is OK over here.

 Plus I want you to know that I think my Grandchild is nice looking if I am allowed to say that.

StM

The Happiest Day

We are so Happy to announce the arrival of our first grandchild, Ainsley Grace Hoksbergen. She was born Sat. June 22 at 10:18pm at Spectrum Hospital in GR. She weighed 7lbs. 1oz., 19 1/2 in. long. She is so cute!! Mary did great with the labor and delivery.

A Sad Day

Stan here:
For once we start not by updating you on Deb's condition. Instead, we tell you that we attended the  funeral today for Dave Breen who was a good friend, pastor, sports fan and lots of other good things.  He passed away last week Saturday after a long battle with cancer.  His family, who we had related with for many years did a fine job of putting together a fine service which really captured Dave and as I sat there I thought Dave would be very proud of them.  But, it has really made us kind of down this week. He will be missed very much.

From Deb:
Dave died on June 1 which was Mieke and Aaron's first wedding anniversary. Can hardly believe that they have been married for a year already and live 1 mile away from us. They are enjoying their new puppy Lambeau very much. He is a nice calm puppy and I have let him out a few times while they were both working. Mieke is now done with her school year so she will be home with him. She is babysitting for two families together on Mon. and Tues. and working for the church the rest of the week.
I had a fun time last weekend up in Traverse City at a shower for Mary. She and Alden are expecting in a less than two weeks now. We are so excited to meet our new granddaughter.

I was so proud to have all my kids at the funeral today. The Breen Family has been a big part of their lives and they all wanted to be there to say good bye. Ross played the Hallelujah Chorus for a postlude.
Ross then went and had dinner with his grandparents at Freedom Village. He had not seen their new home yet. Ross told me today that they just bought their plane tickets to go visit Rumy's family in Bulgaria next month. They got a pretty good price for flights out of Chicago. I am so glad they can do this, because I know it is hard for Rumy to be so far away from her family.

My brother Ken and his wife Shelly were also at the funeral today, because Dave and Linda introduced them and performed their wedding. They and all the kids went over to Mieke's to meet the new dog and see their new house.

I have been feeling really good lately. I have not had any side effects from my chemo yet. They did say that it usually happens after the third round. I have gone in every week for my shot. This next week is my week "off" from anything, and then I have my IV chemo again the next Monday. I promise to do another post when I have something new to report. Otherwise you should figure, no news is good news. I thank you all who continue to remember me in prayer and send me notes that they are thinking of me. It helps to know I am not alone in this.

All HOTS are NOTS

Guess who came up with this title?? I had my first dose of my new IV chemo drug today. It is called Doxil for short. The real named is too long for me to remember. They first drew lots of tubes of blood, then gave me oral Benadryl, IV steroid and then the red colored drug. It looks like a strawberry daiquiri that I should drink rather than have it infused. The drug comes all pakaged up in a huge box of ice with just a small box inside that is the drug they mix up. I am feeling fine tonight after the treatment, but I must admit I am a bit shocked at the restrictions I now have to follow to avoid the bad side effects of this drug. PPE (Palmar-plantar erythrodysesthesia), commonly called hand-foot syndrome. It is skin reaction that sometimes occurs as a side effect of Doxil. It ususally appears on the palms of the hands and the soles of the feet, but may develop anywhere on the body where clothes are tight or where friction, rubbing or sweating occurs. This reaction may cause the skin in these areas to become red, swollen, itchy or painful.

Soooooooooo, I can't have anything hot, (like my morning coffee). I can't have a hot shower, boo hoo. No direct sunlight, so no floating on the pond for me this summer. I have to wear loose clothing, can't take things out of the oven. I can't do dishes with hot water. I can't chop hard foods such as raw vegetables, I can't lean on my elbows and on and on and on. I now get to enjoy frozen frappachinos and lots of iced drinks. They gave my these flat ice packs that my meds came in and twice a day for 15 minutes, I have to ice the palms of my hands and soles of my feet. I did that a minute ago watching the Tiger Game.

I was a bit shocked when they handed me my schedule and it goes up to next February!! IV chemo once a month and then a sub Q shot every week for three weeks and one week off. Lots of Chest x-rays and CT-scans to see if the drugs are working.

So if you see my with my new large sun hat that I got for Mother's Day, you will know why. I had a wonderful field trip last week with my two friends, Jackie and Deb and my sister-in-law Nancy. We did so much in two days!!! Saw the Tigers win last Tues. night, we were so shocked when the bat boy came over to us from the field and threw all four of us a pink Tiger baseball. The fans around us were going nuts. I figured after about the second ball that it was a set up. My wonderful brother Jim had bought them and had him throw them out to us. Thanks again Jim for a great night!! We went to Greek Town for fresh Baklava, rode the People mover, had a tour of the Pewabic Pottery Studio, Hitsville (the beginning of Motown, saw the Heidelburg project ( an neighborhood where they make art out of junk), had dessert and coffee at The Wittney House (and amazing old manion) had a wonderful lunch at Colors, a restruant that teaches locals a trade to serve and cook, using local produce. Dinner was happy hour at the Westin, which was the old Book-Cadillac Hotel, and many more sights......Detroit has lots to offer for those who haven't been there for a while, you should give it a try. We only ran into very friendly locals. Nancy has a new name by the way, "Baby Girl".

I don't always have a lot of energy and I was sure tired after our busy two days. My body didn't know what hit it. We are looking forward to up north this weekend. Stan's parents and his aunt Merle will be coming, along with Ross and Rumy. Mieke and Aaron get my new grandpuppy this weekend, so they will be a little busy with their new addition. I wish you all a wonderful Memorial Day.

 I thank you all for the love and prayers that continue for us. I am trying to enjoy everyday to the fullest and like my friend Dave, eating my dessert first if I want. I am so thankful that Dave B. is doing better with the PICC line and IV fluids. We love you Dave and pray for you constantly. Prayers also for Dave's son-in-law and my friend Kent who also has a reoccurence of his cancer and back on chemo. Kent, I miss our talks when we were in having our surgeries at the same time.  Hang in there buddy!!! Prayers also for my friend and PEO sister's husband David V. who is also battling cancer. Hope you are feeling better. There are way too many people in this cancer club as I know all of you who read this know all too well.

Watching the news about the tornado in Oklahoma, can't imagine how those people feel. My heart and prayers goes out to them as well.

50/50 Chance

I had my appt with Dr. Downey today. He was very backed up which is unusual for that office. So for a 1pm appt. we didn't get out of there until after 4:30. We discussed what the plan would be going forward because of the new spots they see on the CT-scan and the elevated CA-125. I finished my last round of chemo last Oct. They don't want to use the two drugs I had before because it is too soon. When the cancer reoccures this soon, they try a different drug, not to say they might not try it again in the future. They want me to be in a clinical trial research project. I will start this next Tues. It involves getting IV chemo once a month and then sub-q injections every week. The IV chemo drug is called Doxorubicin. The study is to see if this sub-q (VTX) drug given with the chemo drug helps your cancer tumors shrink or stop growing. The VTX is a new type of drug that stimulates your immune system. This study is a Randomized, double -blind, placebo-controlled phase study, which means, a computer picks whether you get the real drug or a placebo (water).

There are lots of tests I need to have done before they can give the first dose. I will be having an EKG, MUGA (heart test) and lots of blood work on Thurs. am. I told them I couldn't have it done in the next couple of days because I have a road trip planned with a few friends. We are going to Detroit, going to the Tiger game tomorrow night, IKEA, the Pewabic Pottery studio, maybe the Detroit Institute of Arts, and lots of other places we want to see. We are staying at my brother and sister-in-law's house in Plymouth. Nancy is going to be our driver and tour guide, she is so familiar with downtown.

So, I thank all of you who have continued to send cards, words of encouragement and tell me they keep me in their prayers daily. I do so appreciated all the support. I ask you to pray that I get the real drug and not the placebo in the study.

We had a lovely day yesterday for Mother's Day. We went over to Mieke's house for dinner after church, Stan's parents and Alden and Mary were there. Ross and Rumy couldn't be there because Ross had to play for a graduation commencement. Some of you may have seen my new summer hat that Mieke posted on Facebook. It is so cute, big brim to keep the sun off my head. I also got a real neat Greek Basil plant from Alden and Mary, it is like a little tree about 2 1/2 ft tall, Mieke already gave it a good hair cut. Can't wait to make some Pesto.

 The good thing about this round of chemo is that I shouldn't loose my hair.

My sister Krista is having surgery tomorrow am so please keep her in your prayers. I don't think she will mind that I mention she is having a hysterectomy. She is hoping that this might also help decrease the sciatic discomfort she has been having. She is having the robot assisted laporoscopic surgery and will be in the hospital over night. I wish her the very best and a great uneventful recovery.

I hope this makes sense to you all. I will report next time what some of the side effects might be.......

Feeling Good

Stan kind of wanted to close out his blog so he posted the update on his. You can find it on the right under Stan's blog. He did about 35 postings but I made him let me see them before he posted them.  You never know what he is going to come up with. He helps me write some of mine and I look those over pretty good before we put them out there.  I am doing pretty good though.  It looks like he is planning of having me around for a while.  That is a good thing!!!!

suspected and expected

I had my CT-scan and chest x-ray done last Thurs. I got a call from Amber the nurse at my oncologist's office today and she said my x-ray looked clear but they see a new 11mm spot near my gallbladder. For this reason and the elevated numbers I will need to have some more chemo therapy. My Dr. is going out of town this Wed. I told her I already have an appt. for Monday May 13 which was my 3 month check up. She said perfect, that is when he will be back. I will find out at that time, what the plan will be. As the title says, this is not totally a surprise. I always knew that chances were good that there would be reoccurance and I might need more chemo. I am thankful that the chemo worked before and I hope it does the job again this time.

We had a wonderful day yesterday at the baptism of my niece's baby Charlotte Mary Jane. She is so cute and wore the same dress that her mother wore for her baptism and was wrapped in a beautiful blanket that my sister Krista made for her. We were up north with my Mom and Dad, so we drove down to GR with them and came back up here. Stan is working calling on accounts up here more so he worked today and will work tomorrow am. I have my first post op check with my new surgeon, Dr. Figg tomorrow afternoon. I was very anxious to hear what he had to say about trying to take down this ileostomy again, but now with more chemo that could change those plans a bit.

It was opening Day this past Sat. for Trout fishsing so Alden and a couple of friends were up here Friday night. They had a great day fishing on the Pere Marquette River. Mary's pregnancy is going great and she has 8 weeks to go. She had another ultrasound and the baby is about 4 lbs. now and will gain about 4 lbs. before she delivers. We can't wait to be grandparents!!

Ross and Rumy flew to Philadelphia last Thurs. He had an audition last night with the Philadelphia Philharmonic Orchestra. He said he played good, but he didn't make the cut. There are 4 days of auditions with about 130 people trying out. It is good experience and he has another one in June in Alabama.

Mieke and Aaron are anxiously awaiting the arrival of their new puppy "Lambeau" (named after the field where the Packers Play). It is a Golden Doodle.......we will see how that goes. They are very excited.

I

CA-125 Update

I had my blood drawn yesterday to recheck my Cancer Antigen (CA-125). It is still elevated at 270.5, but it is not rising. It was 278 a month ago. Normal is considered under 35. It was down to 22 when I finished my last round of chemo. So the oncologist office says I need to have another CT-scan. I will have it done next week at Spectrum. The nurse says that if it is negative, they will repeat the blood test in a month. It is still possible that the bowel surgery has had an effect on the results.

I am doing so much better since the revision of my ostomy, three weeks ago tomorrow. I am still not completely without some issues. I have had two episodes of food blockage, so I am very careful with what Not to eat. I am still having a bit of difficulty finding the correct "bag" to wear. I still have trouble with a little leakage and I am not able to wear the appliance 3-4 days as I should be able to. So, the visiting nurse was out yesterday and we keep trying different things.........

This weekend we will be attending the Grand Rapids Symphony. Ross is playing in the 4 shows. It is called Cirque Mechanics and should be a great show. Sunday am Ross and Rumy are also playing at Ferrysburg Church as kind of a farwell for Stan's Mom and Dad. The church is having a luncheon for them after church.

I am very sad these days because of the very serious condition of a dear friend of ours and a former pastor Dave Breen. He is in Spectrum Hospital with complications of his carcinoid cancer of  
the liver. We are praying for a miracle and think about Dave, Linda and their family constantly.

Easter with All of Us

Stan Here:

Some of you will recall that last Easter Deb had encountered the event of a very difficult infection, some surgery and a prolonged stay in the hospital and rehab center. I did go back and read a few of those posts and while it is true that at that time we did not know the full intensity of that event it is also very true that we could not have had a better day than this past Sunday brought to our home.  By all evidence things were pointing in the direction of spending another Easter at Spectrum.  Deb had to have a revision of her stoma which involved some more cutting and stitching but this time we got the result we needed. The surgery could be performed in a minimally invasive way.  Deb was given the option of staying one extra day there or going home Saturday and before I knew it she was in the car. Our kids were going to be involved in the service and she was going. Compared to other surgeries she has endured the pain was very much lighter.  I am kind of thinking that for her this one did not even get on the charts. Plus everything seemed to be right with the repair job so she was outta there.  She did get some strong warnings on driving and lifting etc but when we pulled in the drive she was getting some stuff off the front porch to give the place the look she wanted to have all the kids over the following day.  Get that Christmas wreath down, the bucket of sidewalk salt gone and lets sweep this thing off for Easter. Spring is here.

For you readers in other locations we have had a late spring here and I was thinking we might need that salt and the ferns were still looking good and maybe needed but they are no longer there.  We also did something to help with the normal preparations needed to have a group over. Some of local stores prepare pre-cooked meals that all you have to do is stick them in the oven and heat them up so we did this. It all worked  good.  She had the table set and as far as I could tell was not much in the mood for the take the easy mode.

We did get a big treat on Easter day.  Three of our children had been asked to provide music for the service. Ross and Rumy played and Mieke sang a lead part in a very touching number that she and the other musicians had prepared very nicely.  My Mom and Dad were there and had never heard Mieke sing this way and am I allowed to say it was a very finely done service on all fronts (not just our kids).  The way I figured it, lets just go with glow. Not sure about me but I know that Deb did deserve this. This was pretty much the first time she has been able to attend anything like this in a month and it was just the right time to "be back".

We had a nice time all day.  Had a nice dinner, and then we all watched Michigan win their game to get to the final four.  As things went that day the game was a runaway. Not much tension and that also was one of the things made the day fun. Not sure all of us are fans of Michigan anymore but at this time of year we all pull for the big ten teams.

Monday we went up north.  Thought we could see some of the spring come there but frankly that was still an icebox.  We did get some things ready but there was still about 18 inches of snow and ice. It is always true that spring is a little later there but I had never seen or thought of it being that far behind.  Could not do some of things we had in mind but we had not been there for many months so in that way it was good to see the place still standing and everything still working.

Now this week we are having a few issues.  Today Deb is having a bout with some cramping and vomiting. One thing that we have learned is that broccoli will never be on then menu again for our family.  With the things that Deb has gone through it does not seem to be a good thing for the system.

So goes the war as they say.  If that guy from North Korea decides to get feisty send him this way and Deb will take care of the problem.  Getting more like old times I think.

Stan

Good news. Fresh views

Stan Here:

By now you know that whenever the title has a little rhyme it is coming from me. Deb has always wondered why I think in rhymes. I am not sure either. It just is the way is. And the way it is today is that we have some good news. Surgery #8 took place at around 10 this morning and took only about one hour. This is what we were hoping for.  Most of you know that Deb had a stoma that for all intents and purposes was not right and was going to cause lots of pain (and was). It needed to be revised to provide some entry into  "life of normal".  We were told that if the Doc could not accomplish this from the outside he might have to go in again. By experience we know that the potential of this type of surgery can be very invasive and requires additional time in both the surgery room and the hospital.

So the good news is that the surgery only took one hour and the surgeon did a nice job of accomplishing everything we desired from the outside (without going in). I think the medical term might be "minimally invasive".  So Deb comes back to the room in  short order and this thing is fixed.  Finally, what looks like some sort of break.  I think compared to all that has happened Deb feels like this is more of a band aid type surgery and she is pretty happy.  In fact the possibility of her coming home Saturday is in the cards and I think she might covet Easter at home. Last year on Easter she was just coming out of ICU, she was confused and really hurting. Every part of this stands on a more promising level that that.

I have reported before that she has not had all that many breaks in this deal and everything right now would point in the direction that she might finally get one.  By now we have become accustomed to long stays and even this news does not make us feel in the clear.  I know this. Only one as close to her as I could fully understand the pain and other issues she has endured and this time it looks like the result she deserves is there. We will hold and hope that does come true.

As for fresh views. I am going to clean the garage, the car, and do a few other things in the AM and I am hoping to pick her up sometime this weekend.  The springtime seems to be getting here and perhaps this time we can combine the good news with some fresh springtime views that bring and allow Deb some relief from all the stuff she has faced down in these times.

That is the news and views.

Stan

Not so great - 278

I got the results of my CA-125 (cancer antigen) test and it went up from 72 a month ago to 278. It had been down to 22 when I finished chemo.  This is not what I was hoping for, but I am not going to think the worst. My oncology nurse said that GI inflammation can cause the count to be elevated. She said my Dr. was on an airplane and she could not reach him now. She said I would need to have another CT scan soon. I asked if I could have that done when I was in the hospital, but she said best not to have it immediately after surgery. Soooooo, we will wait for a call on Monday on how we will preceed with this.

Surgery #8 Coming UP

I can't really believe I am writing this, but I am having more surgery this Good Friday at 12:30pm.
I saw Dr. Ryan Figg this afternoon to have him look at my ostomy and tell me what he thinks. He took one look and say "this will never work, how about this Friday".  I was shocked but happy that this awful ostomy will be revised. I have been in such pain and discomfort for the past 4 1/2 wks. I am so relieved to know there is an end in sight. He did talk to the surgeon who did my last surgery and he did not really have an explanation as to why he did it this way. Dr. Figg said, let's go forward. I knew he would not say anything bad about that surgeon. Another Easter in the hospital.  He will try and do the revision from the ostomy site, try to bring up more small bowel and have it stick out like a proper stoma should. He did say if he was not able to do it that way , he would have to open me up again. I was so afraid he would say, yes, I will try to do a revision, but we have to wait 2-3 months.  He also shocked me by saying he would have no problem in 7months to a year to do a take down surgery again. I can't even think about that at this time.

So tomorrow is my last day to eat for a while. Clear liquids on Thurs and a bottle of Mag Citrate to clean me out, YUCK!!

We did have a nice time in Hilton Head Island with my parents. Stan golfed about everyday. I enjoyed the sunshine and relaxed. I did struggle with my stoma, but I tried my best to take in as much as I could do. The hot tubs were wonderful. We watched a lot of basketball on TV. We ate out every other day enjoying lots of local sea food and grilled and made dinners in the villa the other nights.

Mieke has off on Friday for beginning of spring break, so she will take me to the hospital. Stan has a very important appt. he needs to go to that am. I have to say that I have done this so many times, that it is getting pretty routine.

If you want to know how to pray specifically, please pray that he can do the revision the simple way, then I will only need to be in the hospital for a few days. I am so relived to have this phase of my journey come to an end, because the quality of life has not been the best lately.

I am having my CA-125 blood test done on Thursday, so I pray that it has gone down. Will find out the results Friday I hope.

Ross and Rumy are playing at both services on Easter and Mieke is singing at the second service. I am so sad to miss this, but I will try and watch it live-streamed on my computer.

Bears and Chairs

Stan Here:

Sitting here and reflecting a little on the vacations we have had over the years and so far this one is working out good.  I might recall what I thought was one of our finer vacations. About 4 years ago Deb and I visited Alaska. We rented a car in Anchorage and toured many parts of that State.  When you go on vacation with Deb you live somewhat on the adventure side of things.  You stay in small out of the way cabins, you eat in small out of the way restaurants with checked table clothes. And you do about everything that can be seen and done with the time that you have.  We were there on June 21-28 and I recall it never gets dark. Plus for me the scenery was a little over the top.  I was planning on some mountains but this place somehow redefines what a mountains looks like, how streams flow, what is the meaning of BIG and perhaps what it means for people to march to a different drummer. Somehow the people that choose to live there have a sort of frontier mentality.  The guy who's Bed and Breakfast we stayed at a few nights offered to take us up in one of his small planes. Whenever he would see a moose he would dive down on it to show us.  I finally asked him when he got his license.  Somehow the answer indicated  he had never bothered to get one because he had been flying all of his life. I was not sure if this made me feel good or bad but it is true that many of the people there have some sort of plane and many of them use them to get around that state.  He even had one with tundra tires for landings on all sorts of terrain.  For me I was plenty glad to use the one with floats and have him land us on a few small lakes in the wilderness.  He would check out a hunting cabin and then off we would go again.  I do say to people to try and not let their life get away without seeing this place and I still stand on that.

It was also quite striking that just about everywhere you see signs on what to do if you encounter bears. For black ones you stand and make some noise and hit them with whatever you have and for Grizzlies you do run but you play dead.  We did see a few of these things and I think playing dead would not be a problem when a heart attack would have already have taken place if I had a close encounter with one of these things.  At one point we saw a sign  by the side of the road.  I do not think it was one of these state signs but maybe a private sign at one of the places we stayed.

 It said something like this:
 It is important for tourist to know the danger of encountering bears. 
Always carry pepper spray and try to wear bracelets that you can buy locally that have small bells that will tell of your presence so that you do not surprise a bear. Black bears will generally avoid human contact.
It is also important to know the signs of bear and one way you can do this is to recognize the different types of manure they produce. Black Bear Manure is dark in color and is seen in small piles. Grizzly Bear manure smells like pepper and has small bells in it.

I think  this sign was meant more as a joke but at least it did make a point.  Well enough about bears.

This vacation seems to be more about chairs.  At least we are here at Hilton Head. The sun has been shining. Some golf is being played. (not yet by Deb) Some nice restaurants are being visited. On a one to ten scale the pain that Deb faces resides someplace at around the 4 level and all in all we are having a nice time.  Like I said once before you can feel bad at home or you can feel a little better when you have your family around and are at a nice place.  We had a good trip down here. Stayed in Knoxville and drove the rest of the way the following day. Instead of being all that active Deb is more often found using some of the nice chairs in this place and right now we are watching a pretty good movie about some guy that some how gets stuck on the ocean with a tiger in his lifeboat.  It is called "Life of Pi". Not sure it is all that real of a story but it is interesting. As the story goes though it looks like both the boy and the tiger are going to survive. Thats what we are doing.  I am starting to think that if Deb has been able to survive this so far she will somehow find a day that many of the issues she has endured will somehow reach a conclusion.  In the meantime we will avoid the bears and tigers and enjoy the chairs and the comfort of this time with her family.

And that is the real story for now.

Stan
P.S. I have not done anything on my blog for a long  but I did write something the other day again. I does have a decent joke which seems like it fits with world events right now.

Jokes and Yokes

Stan Here:

 Never been quite sure with all this stuff going on that it is all that right of time to tell a joke. I did hear one the other day that somehow hit me. Here it is------.

 At the end of time there is a huge crowd in heaven waiting for judgement. Trying to get it all organized a heavenly assistant orders all of the women to go with Peter and he asked the men to form two lines. One line is to have all of the men who have obeyed the Biblical directive of being the head of the household and the other line is to have all of the men who have not measured up to this. In moments the line of people who did not meet this standard was miles long and there was only one guy standing in the other line. The assistant suggested that all the men could perhaps learn something from the one guy so he was asked to give some advice to the men in the long line. He looked a little startled and he said he was not sure how he got in this line. His wife had just told him to stand here until she was finished shopping.

 Somehow I think that joke has some reality in it for many of us. Not sure why I think that. Just a guess. So much for jokes on to yokes. Now quite frankly we have not been able to shake the yoke of this entire matter. It kind of hangs around and at times it seems really heavy. The latest issues involve some real advanced pain and some real trouble with getting all things working as they should. It would seem at this point that there will be some hard times fitting any type of "appliance" in the area that is needed to live life with a ileiostomy. The results have been some advanced soreness and rawness and I would be way less than honest if I said there have not been some real concerns here on how best to handle this. There is some chance that yet another surgery will be needed to correct this but right now we are just doing our best to find the best help we can in getting this to work without having to face another surgery. Deb needs a break. I do not know of anyone who needs one more than she.

 If the event another surgery is needed it cannot be performed for several weeks. Healing in the stomach area is needed before anything like this can be attempted. So you know what? We are going to take a little break. We are going to attempt to go with Deb's parents and enjoy a time share they own on Hilton Head Island. Deb and I have enjoyed this over the years and Deb makes the point that if she is going to have these problems she might as well do it in the sunshine. A few of the the things down there will not be in the picture. I think oceans, hot tubs and pools are out. But sunshine, warm weather and some walks on the beach are in. We recall the advice when Deb was first diagnosed "Live your Life" and that is what we will try to do.

 I think my job when we go on vacation is to stand in the line that is miles long and do what is needed to make this trip as good as it can be. I will do some golfing with Deb's dad. It will be nice to be there again with them. It is no fun golfing alone. Nobody to shake hands with when you get a hole in one.

 Stan

Grate and Greater

Stan Here:

Let me start with a joke. I think this one might be a little old but somebody told me once that things are sometimes good when you start with a Joke.

This guy walks into a vet office and he is carrying a limp dog. He is yelling "HELP, HELP". The vet staff immediately gets the dog on the table and the vet comes in and examines the dog. He backs away and somberly tells the guy that the dog is dead.  The guy says that this just cannot be and demands a second opinion. He says this dog has just been running around in the back yard less than one hour ago. So the vet goes in the back and gets a cat. The cat sniffs up and down the dog and retreats a couple of feet and just shakes it's head.  The guy ask for yet another opinion and the vet goes and gets a black lab out of the back and the lab also looks over the dog and backs away and shakes its head.  The guy, finally gripping that his dog is dead offers to pay the bill and the vet says it will be $650.  $650 the guy says, that seems like a lot for 10 minutes worth of work.  The vet says it would have only been $50 if you took my word for it, but the cat scan and the lab reports are $300 each.

Now I am not sure why I wanted to tell that joke. Perhaps only because we have sort of learned that cat scans and lab reports do add up and one of the good things that we have is solid insurance.  Not sure why but somehow cat scans they charge $150 after insurance and I am guessing there have been about twelve of those things in this all.  I do have some good news though.  The smile report is a little more optimistic.  These last few days I have seen the corner of Deb's mouth curl up a little more and the smile is coming back a little.  I think that is coming from enjoying a few good meals and the social nature of at least  sitting down at a table with our family and friends and enjoying the experience of eating again. Things are going pretty well but still plenty of pain. Slowly but surely life is looking a little more normal. As reported earlier this whole experience takes some serious grate but some confidence is returning that getting over the grate will make things greater. I will tell you there has been plenty of grate. (Is that a word?)

On another topic we moved my parents to Freedom Village yesterday.  We had most of the family help. Many hands makes light work and some of the grandchildren are so strong that dressers are picked up like feathers. The rest of the stuff looks like toys in the hands of young strong movers and we had the thing mostly done in 4 hours.  My mom and dad have always been real nice to the grandchildren and I think the kids all wanted to show them that they could help them out as well. I drove the truck, the grandchildren loaded the stuff and even Deb came over after and chipped in with a few things to help them get all settled in.  The new place looked so good when we where done that my mom said it felt like home. In that way it was a great day. Kind of fun to work with everybody and we did not break one thing.  It is a huge transition for anybody to move from a home of 23 years to any type of care facility and it all went as well as could be imagined. Plus we had a nice sunny day.  How can you beat that?

One of our friends is bringing over a meal this afternoon.  Thanks Deb B!!!   She is bringing meatloaf.  That is the first meal Deb made in our home some 38 years ago.  At least now we have 2 people here who can eat it.  All in all moving from grate to greater.  Progress is always fun. Maybe also a while before we have to worry about cat scans and lab results.

Stan

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

Finer in the Recliner

Stan here:

Somehow I hit the wrong key and lost the stuff Deb had written about the doctor visit today so I will do the best I can to give a little update.   The first thing that happened is this assistant had to come in the room and record in the computer the meds that Deb is taking. I must admit it is quite a list.  It is all stuff that she would really like to not take but it is needed now because of the various issues.  Perhaps the largest problem right now is some pretty strong bouts with nausea and last week she started with some new meds that have given some relief from this. She is able to be unhooked from all of the stuff for about 5 hours and now she is taking advantage of this. Like right now she is out with Mieke going to some store here in Holland.  She is not painting the house yet but she is able to do some of the things around here.  I think one of the problems is that much time has been spent in the recliner and every bit of that goes against all parts of her personality.  However she finds it needed to have some bend in her midsection or otherwise that tube that is in her really hurts.

At the doctors visit today they told us they are going to start trying a few things.  On Thursday they are going to do another CT scan and after they review that they are going to try and start feeding her through that stomach tube.  The doc drew a picture today of how that thing works. It goes from the stomach into the intestinal tract and they hope they can introduce some feeding and stimulation to that area to get things working again.  It is very true that one of the common themes of this whole adventure is that they still seems confident that all of this will work someday.   Some of you have expressed that this entire matter has taken way to long.  But I think we all have to realize that Deb's body has been though a lot. So what we have is a little off of the charts and the common thought is that patience is the key thought in all of this.  Although it is hard and frustrating sometimes it is the only path we have right now.

This past Sunday Deb could have gone to church.  That gives you some feel for  the fact that some things are getting better. However, if at this point she would contract the flue or a bad cold it would make things even harder than they are right now so we have decided to keep contact with the outside to a minimum for this very reason. So she is shopping right now but trying her best to control the distance from people. It is people she likes the most so I am sure this will be kind of hard for her. But staying home all of the time is not all that great either so I think she is being real careful out there.

For now we are feeling OK with her feeling finer in the recliner. Somehow things feel like they are getting somewhat better. No great news yet in the medical area but some improvement in the overall outlook.

Stan

A Letter about no Better

Stan Here:

Wow,  Deb and I are sitting here in the family room and how we wish we could post a little something about progress. Very simply that is just not in the cards right now.  It has been a really hard week at home.  It is true that being home has some good things.  We kind of thought that just the idea of home and the lack of hospital procedure would bring some improvement.  Some of that is perhaps evident on the the mental side but we are at a standstill on the physical side. Very frankly some discouragement is in the picture right now.

Every night from about 8 till 8 the next morning Deb uses the IV.  Other than a few liquid treats still no food can be consumed.  Perhaps one of larger problems is that there is still .a lot a pain in the area the the tube is inserted in her midsection. So there is still a lot of stuff hooked up and managing all of that has kind of a pain in the rear feel to it. She is able to move around some and for brief periods disconnect the drain bag she has hooked up and shut off the tube that drains to that.  She just went up and took a shower so she is able to navigate the steps but just barely.  Last night she tried to sleep in the bed upstairs but that did not last all that long.  She feels the best in the recliner downstairs.  I think they sew that tube in so tight that some bend feels the best to her when she is sleeping.  She has been sleeping well and that is a good thing. Perhaps the largest problem is that somehow the feeling of nausea seems to be there all the time.  I cannot relate in total but it is painful for me to know that she does not seem to be able to rid herself of this no matter what she does and what she takes.

So that is it for now. Not all that much fun to write and even worse to endure. We pray for the day of normalcy and you can be sure when that comes we will post it in caps.  Thanks once again for staying with us.

Stan

I'm Finally HOME!!!!!

After 49 days at Spectrum, I was able to come home today. The weather was a balmy 57 degrees when getting into the car. Mieke and Stan came to get me. I had lots of stuff to bring home after 7 wks. I took my first good nap in my recliner this afternoon. There really is no place like home!

I can't say I feel very good yet. The pgj tube hurts alot. They really sew it in tight,so that is a sorce of real discomfort, I'm sure it will get better every day. I try to clamp the tube shut as much as possible until I get nauseated, and then I open it up and it drains lots of bile. The goal when it is clamped is for it to go DOWN rather than out the stomach tube.

The Infusion company delivered two large boxes of stuff this afternoon. My refrig is now full of bags of TPN IV nutrition. The home health nurse came tonight at 6pm and started to teach me how to do it myself. It will run for 12 hrs every night. Another nurse will come back tomorrow night to make sure I feel comfortable with it all.

Mieke went to the store and got lots of clear liquid things for me and then made some jello when she got back. She is great!! She also had all that stuff to try and put away at home. She also went to the pharmacy and had all my prescriptions filled.

Stan seems very happy to have me home, I think he was getting plenty lonely.

I want to thank you all again for being my pray warriors. I can feel the support and love from you all. Please continue as I have a long way to go before this is over. I will so enjoy not having IVs beeping all night and being woke up for vital signs!!  Deb

GJ Tube now in place

Deb writing now. I had a GJ feeding/decompression tube inserted into my stomach today down in the Interventional Radiology Dept. So I could have my NG tube taken out which is the best part!!
The goal with this tube is all part of the plan to get me home.

I am happy to report that yesteray and today I did have a little action from below. My surgeon said we scarred the poop of out me, because my body knew that I was going to have another hole put in it. Even though things are slowing showing some progress, the Drs believe it will take awhile for them to come back completely. I have too much bile coming out of my stomach and intestions that make me very nauseous and then have to vomit. That is why the stomach tube will be used for decompression, meaning I can clamp or drain depending on how I feel.

They don't want to use the jejunum part of the tube to feed me tube feedings, because they feel it would put too much stress on my intestines, so I will be going home on nighttime IV TPN feedings. I will not be eating right away until bowel function improves quite a bit. I may get to have clear liquids, jello, popsickles, etc.

There is a company that provides the TPN feedings and all the equipment I will need. I will be getting these feedings during the night while I sleep. Believe me when I say this is not how I wish I was going home. But, I am so anxious to get out of the hospital that I will do just about anything I have to do to get home.

The goal is to get out of here Sat., but anything could happen, so I am keeping am open mind if it gets pushed back to Monday.  I thank you all for the love and support, I couldn't have made it without you. Stay tuned, I hope the next blog is written from  home in the comfort of my old recliner............Deb