Author: althea

Aug. 20: Another end-of day update…  I went into work at Gathering Waters for an hour this morning and then headed over to Mom’s house for the day.  She had a doctor’s appointment at 11:30 with Dr. Allen, the doctor who did some of her past scopes when she had internal bleeding.  We were hoping to get some advice from him on how to proceed with a couple treatment options.  Mom slept pretty well last night.  She took a shower this morning, but it wiped her out so completely, it was pretty hard for her to get ready for her appointment.  We ended up calling her doctor instead and talking to him through speaker phone.  He reiterated the sentiment that trying to lessen the block in Mom’s portal vein with blood thinner is not a good idea.  We talked more about the idea of trying a “Denver Shunt” to keep the fluid (the ascites) that builds up in her abdomen in her body instead of draining through the catheter she has in her belly.  Dr. Allen felt that the main advantage of applying a Denver Shunt is that you don’t lose so much albumin (protein) from the body.  Mom’s blood pressure was really low today…it’s often very low…and a lack of albumin probably adds to her feeling dizzy and tipsy and less sharp.  Dr. Allen put in an order for some blood tests that the hospice nurses can draw at home tomorrow.  From there, they’ll see if she is low on albumin, and if she is, she can get transfusions for that.  Perhaps it will be a small help to her.

After that excitement, Mom was totally exhausted and crashed in her bed for a few hours.  Joe, Maretta, and I talked for a while, and then Maretta and I went our and ran some errands.  The kids are both in the midst of making really hard decisions about going back to school for the semester.  Maretta is also struggling a lot about whether and how to change her wedding plans (currently scheduled for May 24).  These are such tough choices, and it is so very hard to know what the best decisions are.  They are both excellent students, and taking off a semester wouldn’t stop either from graduating.  There are some really serious pros and cons to either decision, and I wish I could make things easier for them.
Tomorrow morning we are meeting with some of Mom’s new team of hospice nurses.  Already I am so glad we can use their services.  Instead of exhausting Mom beyond belief to go in to the lab to get her blood drawn, someone can come to our house and do it here.  I also got a call tonight from Mom’s dear friend Nancy from the Twin Cities.  She called from the road…saying that she was on her way down to visit because she really needed to see Mom.  While in general, Mom is really much too weak and tired for visitors, it feels good to see the strong the bonds she has with people as they pulled tightly during this difficult time.
If you’ve emailed me in the last few days in response to all that is going on with Mom’s health, thank you!  I check my email regularly, and I’ve been reporting to Mom who I’m hearing from.  However, I haven’t gotten my act together to reply to any of the notes yet.  All the notes feel like little hugs, and I’ve
been getting a steady dose.  Thank you.

Aug. 19:  I’m going to make this a quick post since I’m really exhausted and Bryan has made it clear that I should get off the computer in the next five minutes and go to bed:)
I stopped by for a visit with Mom for a few hours this afternoon.  Maretta was back home after being in Spring Green at American Players Theater for the past day or so.  Mom seemed to be in a similar place as she was yesterday, which is alright, but certainly not good.  She came to the table to eat a yummy lunch provided by Heather and Michael as they visited her from Michigan.
I feel like today was sort of a downer for me.  Friday was terrible, Saturday was better, and today things are sinking in more.  I’m feeling a little like waking up and exhausted to find ourselves in this same, very sad and discouraging place.
Maretta and Joe are both trying to decide what to do about returning to school this semester.  Joe has intended to leave on Wednesday, but it’s a terribly difficult decision to make.  I have so much worry and concern and love for Joe and Maretta and Michael and my dad, and it’s clear that as time goes on things may get harder rather than easier.  Hard to know, but I just wish I could spare them all some of the hurt they are feeling.
Mom has a doctor’s appointment scheduled tomorrow along with our first visit from the Hospice nurse.  I am going to take off work to spend the day with Mom.
Oops…Bryan’s coming to get me!  Good night.

Aug. 18: No major news to report today…  Bryan and Andrew and I came over to Mom’s this morning.  Mom has been feeling about the same as yesterday, but maybe a little better.  She didn’t have to take drugs until later this afternoon, so she’s been more mentally present than the last couple days.

Mom’s brother Peter and his wife Marci came over for a visit this afternoon along with Mom’s mother (Mum).  Peter and Marci live in Iowa and are up visiting Mum for the weekend.  I don’t think that Mum has seen Mom for well over a month, so it was nice that they could see each other.

Since their visit, Mom has been doing a lot of napping.  Andrew took a shorter-than-normal nap, so this afternoon we decided to have him watch his first ever full-length animated movie…the Lion King.  Surprisingly, he watched the entire movie.  At the end, he surprised us even more by really wanting to watch it again.  My mom said, “Why not, it’s kind of a Templeton Day.”  Templeton was the rat in Charlotte’s Web.  He liked to go to the county fair and pig out all day.  So our Templeton day has included watching both the Lion King and Aladdin.  Andrew is turning into a pile of mush.  Mom, Joe, Becky, Bryan, Andrew, and I are all hanging out.  Becky’s mom made us a big plate of lasagna, so that’s about to come out of the oven.  Mmmm.  I love lasagna.

Aug. 17: I asked Mom today how she was feeling and if she was scared or if she had things she wanted to talk about.  But conversing has been hard for her these last few days.  So it was with a sense of awe and tremendous love in my heart that I listened as she said, “You know, there’s a poem by Robert Lewis Stevenson…”  And then she went on to recite the following poem with such simplicity and longing that it just broke my heart.  But it also gave me a feeling of peace.  So it’s with a hope that you might experience the same that I share it with you.

Bed in Summer

 

In winter I get up at night
And dress by yellow candle-light.
In summer quite the other way,
I have to go to bed by day.

I have to go to bed and see
The birds still hopping on the tree,
Or hear the grown-up people’s feet
Still going past me in the street.

And does it not seem hard to you,
When all the sky is clear and blue,
And I should like so much to play,
To have to go to bed by day?

Aug. 17: I have a difficult post to write tonight, and part of the reason is that I’m really just not sure how to frame the situation with Mom’s health right now.  Another reason is that I know that I’m seeing the situation through my own particular perspective.  But since the only way I can tell the story is as I see it, that’s what I’m going to do.

Since we visited Mayo clinic three weeks ago, Mom’s health hasn’t improved at all. She’s been very week and extremely fatigued.  While she went out a few times (including a little outing with Dad last Sunday for their 35th wedding anniversary), she has rarely left the house.  A few days ago, Mom was in quite a bit of pain, was unable to sleep, and couldn’t keep food down.  Since then not only is she sleeping much more and is very groggy, but she has also become increasingly disconnected from the people or conversations going on around her.  She answers questions, but she loses her train of thought pretty quickly.  It’s been a weird shift over the last week, and it’s really disconcerting and hard for us kids to start to feel like Mom is somewhat just not there.  I almost feel like she is becoming unzippered from her active mind and self.

I had talked to Mom on the phone but hadn’t seen her since last Saturday, and it was pretty hard to see the condition Mom was in today.  Dad and Joe took Mom to see her oncologist yesterday afternoon.  Dr. Frontiera encouraged Mom to not hold off on taking anti-nausea and pain meds.  While the one mass (the Sister Joseph’s Nodule) was determined not to be cancer, they still strongly believe that the mass that is blocking the vein that drains the liver is metastatic pancreatic cancer.  Further, they believe that the symptoms that Mom is experiencing are consistent with pancreatic cancer.  And beyond treating the symptoms, there is really nothing they can do to help her.  It really sucks.

Along with making sure Mom had the best medications for her current situation, Dr. Frontiera also gave Mom a referral for hospice.

I know that this probably seems like a pretty big jump from the situation we’ve been addressing the last couple months.  I’ve been thinking of it as a changing of gears.  We’ve looking into all possible treatment options.  We’ve researched and asked and pushed, and the answer we are getting is just a sad, relatively unacceptable answer.

But even so, we have this reality in which we’re living, and I think all of us want to address the situation with as much honesty and grace as possible.  At least, that’s what I tell myself.

So this afternoon, two nurses from hospice came over to our house and explained the many services they can offer.  They talked about ways they can help keep Mom as comfortable as possible and support us all through this difficult time.  We all sat in the living room, and Mom was awake and able to respond to all their questions.

After burying Duncan this afternoon (our dog died this morning too…see this post for more info), Dad and Joe and I went out for dinner, leaving Mom home alone.  When we came home, Mom was in the kitchen making pasta.  I was really happy to see her up and making herself food and wanting to eat food.  I would say that it is completely possible that Mom will improve in the upcoming days and have a much better set of days in the future.  I just don’t know that for sure, and at this point, I wanted to be really honest about the fact that we’re talking about hoping she gets to be feeling better for a while rather than getting better altogether.

I hate to have to share this, and I’m sorry to be the bearer of such unwanted news.  I’m sure that many people are going to be interested in getting in touch with Mom or knowing what they can do.  Unfortunately, Mom’s been so fatigued these past days, that visitors and phone calls are really pretty hard for her.  She sat up and read the mail this afternoon, so letters are good, and we are planning to log into her email (margotbabler@gmail.com) and print or read her messages to her.

You can also contact me if you have questions or just would like to talk.
And so ends the day.
~Althea

August 11: I got a welcome phone call from my mom last night.  The radiologist was finally able to compare four of Mom’s cat scans from over the last year, and they determined that the area that was suspected as a Sister Joseph’s Nodule has not changed or grown at all.  That lead them to decide that it is not cancerous. What happy news!

After waiting for the last couple weeks to find out if Mom should have a biopsy of this nodule (which was just under the skin above her belly button), I’m relieved to have the doctor’s opinion.  Apparently, Mom’s cat scans got sent to someone who was on vacation and then got stuck in transit, so that’s why it took so long for them to review them.

A radiologist reviewed them last night, and Mom’s oncologist called her at 8 pm to give her the results.  This doesn’t mean that the clot in Mom’s portal vein isn’t cancerous, but it is a good sign.  Here’s one thing I read about Sister Joseph’s Nodules:

Umbilical metastasis is one of many characteristic signs of extensive neoplastic disease. It suggests advanced distant metastasis and is associated with poor prognosis.

So I’m happy to think that this isn’t what we’re dealing with!

Mom’s brother, Kirk, is in town from Texas this week.  He took Mom out to breakfast yesterday morning, so that was one of her first public outings in the past couple weeks.  Her blood pressure continues to be very low, which means that when she walks around she feels really dizzy.

We’re going to talk over the next couple days about whether to try a blood thinner or chemotherapy, and I think Mom will be interested in starting whichever treatments she decides next week.

That’s the news for now!
~Althea

August 7: Still not much to report, but I figured that an update on Mom’s health may be appreciated.  We all had a wonderful trip to Jack’s house on the Wisconsin River last weekend.  Mom masterminded the menu, created the shopping list, and then she directed some of the cooking, but in general, she didn’t have to do much.  It was a great little vacation.
To her great relief, the catheter Mom has in her belly to drain the fluid that’s been building up in her abdomen has stopped leaking.  So four the last four days, she can stand up and move around without the threat of getting suddenly drenched without warning.  Thank goodness.  We’re still speaking about this quietly, though, and hoping it doesn’t start up again.

The next step medically are to try to get a biopsy of the suspected Sister Joseph Nodule.  Doctors are conferring about this, and we should know in the next couple days whether they can get something scheduled.

We’d also really like to see if we can’t get Mom’s fluids stabilized.  Her blood pressure has been low, she’s been weak and tired, and losing quite a bit of weight.  If we can’t cure the situation causing those symptoms, we’d at least like to look at ways to treat them.  Mom has been going in to the clinic every few days for infusions of saline, but that hasn’t done much to help her.  So I think we’ll be looking at other treatments in the near future.

We all had a lot of fun spending the weekend together.  When I talked to her yesterday, Mom was thinking about taking a solo trip out this week.  It would be her first time out alone in several weeks.

So that’s the news for now!
~Althea