Weekend Get-away!

I think a big part of the caregiving and cancer-fighting business is to take a break whenever you can.  We have always loved weekend getaways (fondly remembering them in the b.k. days [before kids!]).

This past weekend we attended Sabine's 35th college reunion at Gustavus Adolphus College in St Peter, MN.  (Actually it is part of my history, too.  My first semester at college before I got antsy and joined the Marines was at Gustavus.)



Grrrrrreat!

Gusties lost a close one to the Norwegians from Northfield.

Go!, GUSTIES!  (Sabine spent 4 years at Gustavus and never attended a football game.  This is her first!

Sabine's 35th Class Reunion Homecoming!

Sabine with her first Gustavus shirt.

Great to see the social justice is still an active collegiate pursuit

The King and Queen!

We stayed at the Locust Street B&B, attended the Gustavus-St Olaf homecoming football game, met the Homecoming Queen (who was staying at the B&B, took a class picture on the steps of "Old Main," and attended a performance that evening by comedian Scott Novotny (who wrote for Saturday Night Live in the 70s and was a fellow theater major with Sabine) and then woke up on Sunday morning, attended Church of the Holy Communion (Episcopal) and then tried to get home after finding numerous road closings due to the flooding in southeast Minnesota.  But we finally made it home just in time to attend the American Players Theater's stunning performance in Spring Green of South African playwright Athol Fugard's "Exits and Entrances."  Whew!  A great weekend.  Today (Monday) Sabine gets blood drawn for her appointment with Dr Sheehan next week.  We will then see where the cancer is going (hopefully and prayerfully it hit a dead end!).  Dialysis went well today (bulls eyes on both "sticks!").  Life is good!

Scott just loves crowd comedians!

Add the B&B with Scott Novotny's crazy glasses.

Quite the Week

Sabine's fistula-gram on Monday had some good results.  According to the docs, the fistula looks good and there are no blockages visible -- and the stint that was put in a while back is firmly in place.  So what happened last week?

Nevertheless, the cannulations (needle-sticks) went well in our new arterial site and the old venous buttonhole is now working!  Go figure. 

So the week has gone well until this morning when we were encountering some high arterial pressures.  The procedure is to adjust the needle, raising it, doing some half-twists... still high pressure.  When I was adjusting the needle it inadvertently came out!  Now that's excitement, spurting blood, a loose sharp needle and the dialysis machine screaming alarms.  We got the bleeding stopped but could not get the machine running again because it picked up too much air in the system.  So it's "shut down" time.  Bagging the cartridge in a bio-waste bag and consulting with our nursing staff in Madison.

Sabine has an acupuncture appointment early this afternoon so we will put off another dialysis try until she returns.  And as for the cancer, still watching and waiting.  An exciting day for the retired -- too exciting!

"Houston, we've got a problem..."

It's been a tough two days!  One of those "just went you thought it was safe to go back in the water" days.

After months of relatively easy dialysis connections and treatment, it all fell apart.  Suddenly, I was not able to make the "cannulations" and we had to abandon the "blunt" needles and go to the "sharps." 

This meant that I had to start two new puncture sights above the old ones.  Not an easy task via telephone.  But we did it and things went fairly well.

Then we encountered high arterial and venous pressures and had to abort the treatment.  The second time it happened we ended up going to Madison and getting some help from the staff at our dialysis center. 

Even there they had trouble getting a venous connection (it made me feel a little bit better that it wasn't me as I saw the professionals struggle!).  Finally we were able to make the insertion and begin the treatment with the home dialysis machine in the center. But even there our troubles were not over and we had to terminate early when a perforation occurred.

So what's going on?  Problems with the fisula again?  Most likely.  We are being scheduled for a fistula gram at the UW Hospital to check for a blockage or other problems in the area.  And this morning, at home, I was able to use the new arterial site with a sharp needel and then use a sharp in the old buttonhole when the blunt needle didn't work.  Then the connections were make and we had a good "run."

These are the times that being a "marriage team" works!  We solve problems and take necessary action without bickering or yelling at one another.  At the same time, while I feel the stress of all this, it's not my arm that is getting the multiple needle sticks!  Sabine (again) has been a real trouper (but that's one of the reasons I love her so much, she's always been a great trouper!).

What's ahead?  We will have some hurdles to jump over in the next weeks and some problems to solve -- another in-patient hospital visist to look at the fistula, possible some intervention to clear the blockage, consultations, and then we will begin to work on creating two new alternate needle/cannulation sites and, hopefully, can reclaim those two blocked "buttonholes."

In the meantime, we are "watching and waiting" with regard to the cancer.  We would ask you to continue to pray for Sabine's healing and calm resolve as we wait for the six-week blood test that will determine how those nasty cancer cells are doing -- I pray they are having a tough time and will soon give up!

Thus ends our battlefield report!

Run, Sabine, Run!

Not letting a little cancer flare up crimp her style, Sabine takes first place in her age category at the 2-mile "Dylan's Run" on Lakeside Park in Milwaukee!  Go, girl!! (I had to work while Sabine and other members of St Peter's support autism research!)

A Sadness Realized

It is sometimes difficult to understand the emotional roller-coaster cancer victims and their loved ones experience.  Sabine was visibly upset when she heard that our friend, Dennis, from our cancer support group had taken ill last week.  We had known Dennis for over two years now.  Yesteday, we heard he had died.  This morning, his obituary was in the Madison newspaper.

Dennis was one of the more healthier persons in our group.   To see him suddenly and rapidly go downhill was unsettling to both of us.  Sabine and I were at supper in Middleton when I told her about the email I received concerning Dennis' death.  For both of us it was another wake-up call.  Things change in this cancer game and they can change quickly.  Only a few weeks earlier, we were planning on attending a summer evening concert with Dennis and his wife in nearby Mt Horeb.

I am writing this because I know that the journey most cancer patients and their loved ones are on will not have a happy ending.  I want this life we have together to go on.  I want to hear Sabine say again and again like she did this weekend: "This has been my best summer ever!"

I tossed and turned in bed last night thinking of Dennis' wife and children.  How fleeting this life is.  How important it is to fully live and celebrate each day -- one day that day may be the last day we will have together.  This is the thought that remains hidden in my psyche; that the most terrible event in my life awaits me.  God give me strength.

Our hearts and prayers go out to Jane and her family.  May Dennis' soul rest in peace.

Watching and Waiting

We met with Dr Sheehan yesterday at University Hospital and discussed the lab tests.  Yes, it looks like something is going on with the cancer.  But Dr Sheehan suggested that given the increase in Sabine's "numbers" being rather minimal from what it once was, we should "watch and wait.

So, our attack now is to do exactly that.  We will take the light chain test (our cancer "marker") in six weeks and see what is going.  If the increase is slight, we will wait six more weeks and then meet with Dr Sheehan to formulate a strategy if the increase continues.

Right now, Dr Sheehan is not keen on a second stem cell transplant.  He feels we have a number of chemotherapies that can be used to keep the cancer in check before we think about another transplant.

While Sunday was "crash-day" for both of us, we have recovered and Sabine is back to being her bubbling, positive self (and, therefore, so am I!).

She wore her "half-full" t-shirt into her consultation with Dr Sheehan and was also wearing some wildly decorated "flip-flop" shoes Helen Ackley (from our congregation in North Lake) had made for her.

In the meantime, "celebrate life every day!"  A good motto for all of us -- whether we are fighing cancer or not!

Tick, tock, tick, tock TICK!

I always feel a bit anxious before Sabine's visit to her oncologist.  I think I have described it as hearing the tick-tock of a clock (is it a time bomb?)  Last week, Sabine took the customary blood tests in preparation for her meeting with her oncologist, Dr Sheehan, this coming Wednesday.  All but one of the blood tests had come back and in my layman's opinion, all looked good and within "normal" ranges.  But one was missing.

It was the primary cancer test -- the test that would tell us if Sabine's cancer was still in check (since the stem cell transplant a year ago), or not.  It is called the serum light chain test.  Usually, we get the test back from the lab in California about the same time we get the other locally-tested blood work.

So we checked and checked last week and nothing appeared on Sabine's test results chart.  We checked with the local lab who said that it should be coming back any time now.  I have to admit that I wasn't too worried about the results because I would have bet the "numbers" would be okay.  After all, Sabine had plenty of energy these past six weeks and we (except for dialysis five times a week) were living a pretty normal life, running, biking, and kayaking with a lot of other activity including a weeklong visit from numerous family members!

But last night we stopped by to visit some friends of ours who are also members of our cancer support group.  We missed last week's meeting because of the family gathering and now they were giving us an update -- and it wasn't good.  A man we had gotten to know quite well from our group suddenly was in palliative care -- his cancer had come back with a vengeance.  He had plunged downward rather rapidly after his second stem cell transplant.  I could see that Sabine was very upset when she heard about what had happened to him.  Last year alone, we lost two members of our support group to the cancer each one of us battles.  Each death is shaking reminder of this untreatable cancer!

This morning, on the way to lead worship in North Lake, I casually checked my email messages.  There was a notification from Sabine's physician that she checked on the lab test and was sure it would arrive by the time we saw Dr Sheehan.  But there also was another message -- "new test results."  I pulled the car over and went to the website of Sabine's healthcare provider and pulled up the new test results.  It wasn't what I had expected -- the numbers had doubled and were now out of the normal range!

 It was a "kick in the stomach" for both of us.  But what does it mean? The cancer was now growing again, but how much?  Is this significnant?  What's  next for us?  Well, right now we don't know and we must wait in this interim period until we consult with Dr Sheehan.  But we had watched these numbers double before when Sabine went through her last chemotherapy.

I could see that Sabine needed to process this downturn.  She asked for some time alone and urged me to continue to North Lake and lead the worship service.  I was shaken, but felt I could carry on.  I prayed all the way.

When I got to church, our friends noticed Sabine was not with me.  "Is everything okay?" they asked.  The grief started to well up again.  This was too much like when I first heard "you've got cancer!"

I had two choices here.  I could "suck it up" -- "the play's the thing!" -- and be a good Thespian.  Or, I could share this grief with my small congregation.  What would I want if I was sitting in the pew?  What would I expect from my pastor -- to tough it out, not to share his life when he had preached so much about being real and developing an authentic Christ-like community?

I don't enjoy sharing my grief in public.  I dislke public crying even more.  I still think of myself as a "tough guy."  But this was my community, these were my friends who had supported me and Sabine these past three years of cancer.  I decided I owed it to them to be authentic.  "Tough guy" wouldn't cut it.  I decided to share my grief and sadness.

After the gospel reading about a woman who was healed by Jesus, I stood up and read two verses of the psalm we just read (Psalm 71:17-18):

Since my youth, O God, you have taught me,
and to this day I declare your marvelous deeds.
Even when I am old and gray,
do not forsake me, O God,
till I declare your power to the next generation,
your might to all who are to come.

I was then planning on making an announcement concerning the lab test results  -- but I could not.  I became chocked up and could not speak.  So I sat down and asked my friend, Andy, who was assisting me with worship, to tell what I had shared with him and his wife earlier.

Andy made the announcement and then offered a prayer from the Book of Common Prayer, "A Prayer for a Loved One."  By that time I was able to collect myself and fill in more details and then we all prayed again for healing and strength for Sabine and each one of us.  I recited the 23 Psalm... "lo, though I walk in the valley of the shadow of death, you, God, are with me..."

The rest of the liturgy moved along until I moved to distribute communion to the congregation.  As they person held out open hands to receive the sacrament, I noticed red-rimmed, loving eyes shining up at me -- bouying me and Sabine up on the journey ahead.  I knew again why I was a Christian.

When I picked Sabine up she had just bought a new t-shirt and was wearing it and  smiling.  "I just needed some time" she said, "to think, pray, and pull myself together!"  Our prayers had worked! And Sabine was back to being her same positive, loving self.  On the t-shirt?  A cup with the inscription, "Half-Full!" (not half-empty!) I told her again how much I loved her and how we would, together, "press on!"