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.