The Good, The Bad and the Ugly

Stan Here

Somehow years ago I got in to Clint Eastwood movies.  I am not sure I even should admit this but he always had a way of phrasing things that sort of have stayed with me.  In fact in the movie mentioned I do not recall much in the good class, just the bad and the ugly. And there are some things about recent events here that sort of reside in the land of bad and I must report a few of those things now.

It is a long day when the people who administer treatments for cancer reach the point of telling you that options for treatment have run out, cancer is back and we do not even need a cat scan, "I can feel it in your neck". The car rides home on the way from such news are long ones and the reality of such meetings have what I might call of a "ugly" feel to them.  Gathering up the pieces, making the hospice arrangements and dealing with all the feeling that go along with that do not have many other words that fit much better than that.

Presently Deb's pain is under control.  To accomplish this though the effects of the medications have left her in sort of a groggy state and she can often drift off to sleep even when people and friends, babies and relatives and all of the stuff that have provided her with a lifetime of stimulation are very close by to her. Bluntly put, it is hard to watch.

In all of this though there are some parts that reside in the good category.  The hospice people that have been assigned to her case seem very capable.  She slept last night in her new hospital bed and it fits her body well and she had a good night of sleep.  The visits from her friends have been very thoughtful and kind and the expressions of love and help have been very touching to her.  The hospice person who was out here told her something interesting.  After he explained that a person had called his office and expressed the emotion of making sure they took good care of this patient he explained that the transition from a helper to a helpee was going to be harder than she might expect.

They are going to switch her pain meds from morphine to methadone.  This has to be a gradual switch due to withdrawal issues but it should be done over the next week or so. It seems that a period of life can be achieved where Deb can be functional and pain free.  And we hope this all works like it should.  We are going to attempt to attend a few Christmas things.  She really wants to go to the Christ Memorial Christmas concert and she wants real bad to hear Mieke sing on Christmas eve in her service.  So we are going to do everything possible to have that happen.

I think the job right now in  our lives is to do the best we can in living in the "good" and my bet is if we do so the bad and the ugly will again take their place on the very bottom of a well lived life.

Stan

Starting Hospice

Mieke here...

Things have taken another turn with mom's condition. She has had some very difficult days of extreme discomfort and we are now proceeding with the next steps in her care.


Mom and Dad went to the oncologist today and it was decided that they will no longer administer chemo of any kind. There was evidence of growth of tumors in the neck area and her CA125 count was over 1,000...much elevated from the last count. With all of these factors, it was clear that it would be unwise to continue chemotherapy and from here on out treat the severe pain mom is experiencing right now. With the question of "What would be a reasonable expectation for the time left with Deb?" we received a stark answer of not many weeks. We are hoping that after meeting with Hospice tonight, we can start to make her feel more comfortable with some different pain treatments. It is becoming evident that with mom's ileostomy, she is not experiencing relief from the strong pain meds because they are not absorbing into her intestines. We will find out more when we talk with Hospice tonight.

We are quite unsure about what it will look like as mom's condition becomes more intensive, but we do think there will be a point soon when we could use some help. I have set up a site for people to sign up to bring meals and sign up to stay with her through the night. If more needs arise, I will post them to the calendar. Right now, mom is not able to read messages on her phone or email, but if you send them to her I can try to relay the message. My number- 616-566-8545
Please email me at miekemutschler@gmail.com if you would like me to add you to this site so you can sign up for giving care. You can also click this link and request to be a member.

https://my.lotsahelpinghands.com/community/debhoksbergen/home

Thank you for your prayers. They are needed especially now for comfort for mom and for us as we prepare for this difficult time.

-Mieke (with help from Stan)

Christmas from us and a Little about the Bus

Deb asked me yesterday, “When are you the happiest?”.  The answer to that for me is simple.  I told her I am happy when I am writing something.  So that is what I am going to do right now. I want to write a Christmas letter.  Bluntly put it is a little harder here to be as happy as normal.  Gotta tell ya that if the word cancer was not in our picture we would both be happier but as most of you know the strong adventures of that disease has made its visit to our home.  But that is not what I want to talk about today. I want to send a Christmas greeting.

It is hard when I write stuff to not include a few things about bus driving which I am doing right now for our local school system.  I climb on the bus at 6:30 every morning. We go get high school kids first and then elementary.  On my high school bus I do a riddle each day.  The kids are getting pretty good at solving these.  Here is one from this past week. “What is as small as an ant, as big as a whale, as slow as a snail, but you can never catch up to it.”

Another one is “what goes up but never comes down?”.  The answers to those come later but for now I feel like telling you some stuff we have gong on.  For some years I worried that many of our friends had grandchildren but somehow this part of life had escaped us.  I was worried that I had not done a good job of explaining to our kids what was needed to have this happen.   But nature did take its path and now we have been blessed with three and one on the way.  Alden and Mary have a 2 year old named Ainsly and this past summer had a fine boy named George.  I call him King George.  Mieke and Aaron have Lorelei born this past summer. One of the finer and better behaved babes I have seen.  And Ross and Rumy are expecting a little boy to arrive sometime in April.  I can kind of picture their baby being born with a harmonica in hand.  In any event I am not sure I can find the words to describe the joy we have all experienced as we now  enjoy this portion of our lives 

One nice thing is that the adventures of these children have provided for Deb a strong reason to keep fighting the battle she fights on a daily basis.  The will to survive is aided by the joy we experience in the relationships we experience with these grandchildren.  In the Dutch language the word is “klinekindren” and in any language I think for all of us who have experienced this we find a special bond.  Mine are the best though, just had to say that.

Deb had to give up something precious to her.  She has had some events of falling at unexpected times. With the pain meds she experiences some times of weakness and on several occasions has suffered a fall.  She worries that if this would ever happen when holding a child that injury could result so she had to give this up.  The kids have been very understanding of this as they have given us plenty of quality time with the grandkids without risking this event. Driving has also been more of a challenge for her and many friends have assisted in this on trips to GR.  Our friends have really helped us.  Thank you.

As for the riddles the answers are really simple.  They are “a shadow” and “age”  In some ways for us life goes on as sort of a shadow of times past.  And yes our age is going up and not coming down.  It will be a strong challenge to reach another Christmas for Deb.  Recently the pain and pain meds have been very intense and hard to deal with.  Knowing her though you all know the lights are strung and the tree is decorated. She even bought a Santa suit for me for 7 bucks at a garage sale.  It is a nice one and I am going to put it on and hold the klinekindren on my knee and we are all going to make the best of it.

In every event there is always a note of humor.  It has been important for me to have the bus job. Had a kid from the fourth grade get on the bus the other day.  He told me he was going to have a baby brother or sister.  I asked him when his parents had told him about this.  He said they never said a word to him.  He could just tell by the noises coming out of his mom and dad’s bedroom that there might be a baby on the way.  Not sure he had it all figured out yet. It sure did bring on  a smile to my face. Almost every day I have something happen that brings on a smile.  Not sure this is the right way to end a Christmas letter but you would not believe the stuff the bus drivers hear and know.  (The kids on my bus have a good time and they all call me Stan the Man. We have fun on the way to school.)

For now all this driver really knows is that through some of the trials is the fact that I wanted to write to you and I want you to experience a Christmas season that lives on the highest level.  We will try to do the same. The spirit of our friends as we deal with some of the issues mentioned above and the fine treatment and care we have received make us realize some of the true meaning of this season.

Stan and Deb

Coal Train

Stan here,

Deb just mentioned to me that we might want to update the blog a little.  As everything works out we both crave  to put something up that is bright and nice but the reality is that things of late have presented more challenges rather than solutions.  In a moment I will have Deb update the medical stuff.  I am not sure I am qualified to do that.  I had something on the bus today.  Somehow when the train delivers coal to the Grand Haven power plant  all the kids get home a little late. There are a couple of engines and a bunch of coal cars behind.  When you drive a bus you wonder if anybody at the railroad thinks of perhaps not running that train at rush hour.  I guess all I can say about this is that the coal train that we are riding on right now decides to run when it wants, It holds up traffic as long as it wants to, and when you face it you find it has sort of a mind of its own that falls somehow outside of life as we all might like to have it.  So here are the details.

Deb writing now:  Stan is thinking lately in bus terms but let me attempt to give a little more detail to the lumps of coal.   I got the results of my last CT scan and the results were good. There was no progression of the disease. A couple of the lymph nodes have gotten a bit smaller.  The one bad thing is finding a chemo agent that works. So this past Monday I started the last drug they seem to have to try. Is is called Topotecan. It sounds more like a Hawaiian drink that should have a little umbrella in it rather than a chemo drug. I have it three days in a row and then I have 2 weeks off. I have chemo the three days before Christmas. It makes me very weak and clumsy. Maybe it is also the strong pain meds I am on. I fell today getting on the elevator. I felt so stupid and was so glad there was no one around. The problem was, I was so weak I could hardly get up to get on the elevator.   I appreciate the cards and texts and words of encouragement from people. My back is also giving me real problems.  I think that I gained so much weight from taking the steroids that I am walking hunched over and that is really causing me problems. Sitting down is no problem, but walking is really painful.  I am going to ask about acupuncture next time I see Dr. Downey.  I am excited about decorating for Christmas. Will wait for the warm weather this weekend to put out some lights.   Love to all, Deb

Denali, mountain or filter??

Hi, this is Deb, writing a post for the first time in a long time.  I had a Vena Cava Filter put in this am and it all went well. I had it done at Blogdett Hospital in East Grand Rapids. (They are redocorating that place and does it look nice!! )  It is called a Denali filter. I had to have it put in because the side effects of bleeding in the kidneys was too dangerous that I could not give myself the Lovenox shots to prevent the blood clots.

I feel like there is so much that I need to say, since I have not written in so long, but I am too tired from the meds I received today during the procedure.  I will try and write more at a later time. Thanks for all you love, prayers, meals, cards and support.  It means so much. Deb

Cancer, Chemo, Current Status...

Mieke here. As much as I may not like it...I am back to update the blog with some unfortunate news. When mom was first diagnosed with Ovarian Cancer, more than 4 years ago, we were devastated. Who wouldn't be? We were given a poor prognosis of maybe a few months because the cancer was coating mom's organs and was so advanced it was inoperable. Leave it to her to push through and live a life to see me married, Ross and Rumy graduate with their doctoral degrees, Aaron and I graduate from Hope, Ainsley born, George born, Lorelei born, anticipating another baby in April (yay Ross and Rumy are expecting!!!) a nephew's wedding in Hawaii, selling their family home of 27 years, moving into a condo with a lovely view, continuing to work as a nurse at Holland Hospital, watching Stan the Man become a bus driver for WO, and a surprise 60th birthday party! Lots of experiences that we weren't sure she would have back then. Thank you God for these gifts. Not to say that these times were not mixed with hardships, hospital visits, chemo, blood transfusions, and surgeries that took us all on an emotional roller coaster. Amazing how the good times in life outweigh the bad. All along, we had support from mom's faithful friends and family who were there for meals, cards of encouragement, flowers to brighten her spirits, and visits galore. Thank you for that. Now, we are facing a tough turn in the journey....


Starting a few weeks ago, mom had swelling in her body which we believed to be caused by various factors like chemo and steroids. While spending time up north with dad, she became very ill one morning and an ambulance was called. Ainsley was very confused why grandma had to ride in the white ambulance :( This led to figuring out that mom had a Pulmonary Embolism in her lung and blood clots in her legs. This was a scary time as she was very weak and sick. We found out that only 1 in 5 live after a PE episode. She was put on blood thinners and a few days later, she started to have blood in her urine. The urologist figured out there was bleeding in the right kidney caused by the Lovenox. Surgery was done to cauterize the bleeding in the kidney last Wednesday. This did not seem to stop the bleeding, it got worse, and she had extreme pain from passing blood clots...causing another hospitalization. Ugh, are you sensing how difficult these weeks have been? To top it all off, mom missed Alissa's wedding (her niece from Chile), which she had been looking forward to for a long time. When our whole family returned from the wedding in Detroit to visit with mom and dad, mom was in so much pain she couldn't get out of bed or speak much at all. It was very hard to see her that way. It was so tough that we felt this might be the end of her life. We met with Hospice because additional care for pain was needed. It turns out, the methadone that mom was given for pain had not taken full effect and that is why she was so miserable. The next day, she felt MUCH better. She was even able to go to a funeral for a friend from church. She has been much more comfortable since then.

Today we had an important meeting with her cancer Dr. We were prepared and ready to ask the "tough questions" and to see where this all was going. We were quite surprised and maybe not quite ready to hear such an honest response. "We think you have about 6 months to a year to live." He said it like it was a plain a simple fact and it hit us like a ton of bricks. He explained that she has beat the odds more than once through this whole journey and she has had much more time than most. Still, not a fun thing to hear. We decided it is indeed best to continue chemo to try and bring her cancer count down. It has increased from 368 to 606 in the last month, being off of treatments during that time with all of the other complications. If this chemo does not work, they will try one other type. If that does not work, she will stop chemo treatments and enter Hospice to keep her comfortable. She will also have an IVC put in to prevent blood clots going to her heart.

Sorry, this was long and not fun news for anyone to hear. BUT...we have decided that we will celebrate her life and make the best of the remaining time together. Will you help us? There is so much to live for! We are also going to need your support more than ever as she will need 24/7 care when times are hard. We can figure this out more as that time comes near. We will do our best to update here. Thank you for being there for our family, you have idea how much your kind thoughts and prayers mean to us.

-Mieke

Stan's New Blog

Interested in reading up on Stan's new adventures as a bus driver? Click the link below to read his stories at the new blog...Wiper on the Bus

http://thewipersonthebus.blogspot.com/