What do we Know and What we do not Know

Stan Here,

I am sure that almost everyone has experienced some sort of thing where at some point you  are  at a camp someplace in younger years and somebody asked you to shoot a arrow at a target. I recall those days.  The types of bows and arrows they gave you sort of sent those arrows in a way that nobody would ever be hurt. They sort of followed the laws of Newton as they arched to the the targeted bail of straw.

And that is analogous to what we have here.  But the arrows have sort of sharp point to them. They come in the form of delivering sharp pain, they arch their way in to a body that is not able to take much more and they come with a poison tip which arrive at  spot in a way that really can hurt.

And that folks is exactly what we face here.  As the Hospice people have visited a question they often ask is on a one to ten scale how might you describe the pain. I have not witnessed a answer of  anything less than a seven.  Long and short, we are in trouble here and the pain is sharp and consistent.

One of the most interesting things that happens here is that a different person wakes up every day. Good nights and bad.  From a husbands stand point the level of meds are stunning. While I know that others have faced this I would not be honest if I did not say that this is  a stunning event.  In that same frame is a respect for the quest of life and the desire to get out and do a few things. We have experienced a week or so of "getting out".

Deb has attended most all of the "January Series". We went to dinner with some friends this past weekend, we attended our church,  she still knows how to get mad at me (which is a good sign) and life on some fronts goes on as normal.

Most of all though is that our  friends have stayed with us in this most difficult period of life. So we do not know  the path this will take. We do see the destiny and the related emotion that comes with this all. What we do know is that in whatever path this might take we revel in the support of our friends.  Deb said it best the other day, "It is over the top"

We thank you all,

Stan

Musical. unusual. and Realistical.

Stan here,

I am  not sure why I always find the need to put some sort of rhyme to the titles, But allow me to do so. My mind sort of goes this way.  It is interesting to me that in the course of life we all find adventures that bring us to a spot in life that words do not find the proper definition of the the spot that we reach.

The spot we are on right now is the very fact that we have a situation that requires a great degree of care and involves some degree of confusion.  It has within the picture some optimism.  Recently Deb has had 3-4 days of being able to get  out and do some things.   As we talk one of her friends is taking her to the January series which is a group of talks sponsored by a local college.  She always has dwelt in the feelings that come from the smart people and I guess that will continue till the end.

Can I say this?  We have been blessed by some good days.  We have been blessed by some good friends who have stayed overnight and during the day to help with the meds.  Also, some of the finer meals we have experienced.  I said to Deb a few days ago that one thing I would never understand is how many of our friends do not weigh 350 pounds at least.  Culinary skills around here have never been at the top of the list but the fine thought and preparation of some of the meals and treats we have seen and are appreciated in a special way. The end of life has a gentle exit ramp.  The friends we have have shown me in a special way how it is a gentle turn. I cannot thank you all enough.

Deb pounded out on the piano  a rendition of the songs she knows.  Let them ring in a special way.  It was so good to hear this again.The days of normalcy are a treasure, the days of pain are a pain, the days of music are a blessing and a gift. Through this all though are some strong days of late.  The best we have seen in while.

Thanks to all.

Stan the Man

The family glue

Hello All,

Mieke here...I feel that it is time to update. I am here with mom and Lorelei, both are sleeping. Mom is in the recliner and Lor is tucked in the hospital bed that has become a piece of furniture in the living room. Please excuse me as I allow a bit of emotion to come through this post, sometimes I just post facts, but today I'm feeling like I want to share my heart.

Mom is really sick. Some days she seems better and I get hopeful that this is the "new normal" and we can enjoy time together. I talk with her about all the stuff that I would normally share in the old days. About my recent shopping finds, how my friends are doing, how long Lor slept through the night. Then other days I come over to find her much sleepier and hardly able to respond to questions. Saying this journey has its ups and downs is a major understatement.

Earlier today Ross and Rumy left with dad for the airport. It was emotional for both to hug mom and say goodbye, hoping that this would not be the last time they would see her. Unfortunately, we just don't know. Our visit with them included good laughs, lots of time with all three kids (Ainsley, George, and Lorelei) and plenty of reminiscing about times we all wish we could go back to. It is hard to enjoy time together when mom is sick, because it turns out that moms are what hold a family together. They coordinate the meals, make beds, wrap the presents, make sure everyone is happy, and insist on ONE good family picture. When this person is not present or too weak to fulfill these needs, life just doesn't function like it should. My brothers, dad, and I try as hard as we can to keep up everything that is void because of mom's condition but...we don't even come close. Moms...know how much your family needs you and appreciates you even if they don't express it.

I am experiencing something that I'm sure many do when someone they love is close to death. I look around and see everything that reminds me of mom. I am fortunate to have spent much time with mom these past few years and as a result, my house, my yard, my classroom all have reminders everywhere I look. My headboard was painted by mom this summer after we picked up the old shutters from a house nearby, Lor's nursery doesn't contain a single picture/mirror/decoration that mom didn't have a part in, my classroom's bulletin board fabric was stapled in with care after mom insisted that we iron the 10+ yards or chevron to make them "perfect" for my 4th graders. I love that my life and surroundings have been so influenced by my mom, but I get a major heartache when I think about those memories and the coming absence of them in my life. Sometimes I go to bed and Aaron looks over and sees my crying (once again) and I express to him, "I'm just not ready to lose her". He always replies something like, "Meek, you're not ever going to lose her, you are your mother. You act like her, talk like her, sing like her, and raise our baby like she raised you." Thank goodness I have him to remind me of this important truth. My mom will always live on in me and in Ross and Alden.

I was cleaning up a bit in the kitchen today and something fell off the fridge. A wedding invite for mom's close friend's son. I picked it up and looked at the date, January 2. Uh oh. I brought it over to mom and asked her if she RSVPed she was going. Her face fell...yes, she had planned to go. No...she will not be able to make it today. Another life event that she was so excited for that she must miss. I'm not sure I will ever understand why my mom has to go through ovarian cancer and all the pain and heartache it brings...for now I will appreciate how strong she is and has taught me to be. I will try my best to take care of her and help dad as he deals with the loss of his life partner.

Please understand how hard it is to communicate back to everyone as they reach out to her. I try to read her texts to her and answer emails...but I don't always succeed with all avenues of communication. Please use this website to sign up for ways to help mom as needed. I just created a daily task of checking in around 2pm. Go to the calendar and click on the task to sign up.

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

Much love, Mieke

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