Lifted up by Eagle's Wings

An eagle has taken a liking to our farm. (We just hope he is not simply scoping out our geese!). The Bible tells us "those who wait for the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint" (Isaiah 40:31).

And in the Psalms we are told this about God: "He forgives all your sins and heals all your infirmities; He redeems your life from the grave and crowns you with mercy and loving-kindness; He satisfies you with good things, and your youth is renewed like an eagle's" (103:3-5).

So, this eagle must be a good sign! His presence reminds me of God's promise of strength and renewal.

This has been a rest-week for Sabine. A week without chemotherapy. Her echo cardiogram got mis-scheduled this week so we will have another go at it on Monday.

This coming Wednesday is the day we meet with our oncologist/hematologist, Dr Sheehan and see how the last round of chemotherapy went.

We are slowly, but surely, getting into a routine of appointments, scheduling, insurance, and rest. Last week, our 3-day "raising" of the cottage produced wonderful results. Thanks to all of you who were part of the finishing team.

This week, Sue and Dale finished up the electrical work. And on Saturday, John, a fellow martial artist and energy consultant will check out the cottage for drafts before the St Peter's travelling insulation team blows into town (and into the attic) on Tuesday morning laying down a good 18" of fuel-saving insulation.

This leaves only a little bit of touch-up work around the cottage and then, later in the week, the folks from Don's Electric in Dodgeville come and setup the appliances.

As of now, we don't know how the chemotherapy (Velcade and dexamethasone) has worked on this round. They drew blood from Sabine on Monday and because some of the tests must be done out-of-state, we won't know the results until we consult with Dr Sheehan on Wednesday.

This has been a hard and cold winter in more ways than one! But we both feel comforted and unplifted by your love and prayers. The women of St Peter's each recently sent Sabine a package of crazy socks -- from "Tweety Bird" to "Betty Boop!" Then "Sexy Sox," "Martini Sox" and mis-matched, colorful and zany socks! I can attest to the fact that each package brought both a smile to her face and warmth to her feet. She even got a hand-made hat from Nepal thanks to our friends Joji and Lori from California. Thanks again to all of you.

Stay tuned as we come to the end of this week...

God's blessings to you all!

Cottage Raising -- Final Day!

Just so everyone knows, there were coffee breaks and this is the evidence. Our "final day" was primarily devoted to painting and cleanup -- and did we have another great crew. By the end of the day, the cottage had another coat of paint and all kinds of loving "touch-ups." We just have one more 1/2 to blow insulation into the attic. If some of you feel greatly left out -- remember we need a crew of about 3 or four (hopefully, someone with experience) who can do this "final" inside job.

At the end of the day, there was a bit of levity as local friends of Charlotte's put together an "all-chick" painting team. They were joined by Steph Naze and Kathy Marks (and her consort, Andy). "Spark-plug" Kurt organized the effort and at the end of the day, put the hinges on the basement trap door and got that working.

There seemed to be a break out of song (see the "can-can" picture [above]) as the day ended. And look at those floors!

Steph patrols the elusive paint spots with her trusty can of "Goof-Off." SIMPLY A GREAT DAY AND THANKS TO ALL OF YOU WHO HELPED US OUT. I will give Sabine a tour of the cottage today -- won't she be surprised!!

Cottage Raising -- Part II

Barb is busy painting and yesterday she brought great brats and other treats for lunch.
"Sparky" Kurt is recruiting younger and younger workers. What a slave driver!







AND THEN THERE IS TOMORROW -- OUR FINAL DAY! BE THERE OR BE SQUARED!

See if we equal the diversity of folks from St John's in Portage, St Peter's in North Lake and the Katori Japanese Sword Club!!

Day Two -- Cottage Raising

The temperature is below zero.
The snow is up to their ears.
But the "Cottage-Raising" crew presses on!
The all-chick paint team is a virtual rainbow of colors -- mostly on their faces!
But watch them go!
Paul tackles the accordion door. Hear him play.
See Ted watch.
Another master woodworker ponders the essence of the day.

A Note From Sabine!

Dear Family and Friends,

I know it has been a long time since we've heard each other's voices. As I get stronger in adjusting to my new situation it will, I'm sure, become easier. For now, however, talking often results in tears (as does writing) and drains me every more than you can imagine.

Keep me steady in those thoughts and prayers of yours so that I will continue to get stronger and able to share more of myself with you again.

Although I often see the negative in what is happening I had a wonderful experience I would like to share with you. I woke up at 2 a.m. (not usual these days) in my warm and cozy bed, rolled over to see David sleeping next to me. I could hear his breathing and I began to cry tears not of sadness, frustration or anger, but happy tears and tears of thankfulness.

At that moment, I realized there was absolutely nowhere else in the would I would rather be or anything else I would rather be doing. I know this was a very valuable lesson for me.

It is important for me to remember that now is all we really ever have. How many times have I told people that "a slower day to do the things you think are important" will never come? If we put off improving our relationships for a later day it will never happen -- it is both a myth and a delusion! I guess that's why it is important for me to say "I love you" now -- today!

Well, that's all for now folks...

I am thankful and I love you,

Sabine

Cottage Directions

It's -18 below zero this morning! Yesterday we went to our first meeting of the Madison Area Myeloma Support Group. It was a wonderful and comforting experience. These folks have all successfully battled myeloma far beyond the statistics! A great bunch of helpful and strong people.

And I forgot to give all you "home improvement types" and address and directions to the cottage, The address is:

222 West Exchange Street
Mazomanie, WI

The directions are: To take Hwy 14 into Mazomanie and then turn north at the People's Bank (that's Wall Street).

Go two blocks north on Wall Street to the end of the block where Exchange Street intersects and the cottage is right there on the corner. You can't miss it!

Kurt says, "Be there and make it square!" or something like that....

Blessings and have a safe drive. And yes, Lord, we do have enough snow!

Cottage Finishing in Mazomanie

Here's a Message I got from Kurt who is our project "Spark":

Hi David,

I just want to confirm the work days schedule with you so you can post it to your Blog and forward to your list.

Thursday (February 21)
This day will be mostly for trimmers, or people with some basic carpentry skills.
All materials will be on hand, bring your favorite tools.

I will set up acompressor with brad and finish nailer, and a chop saw.

Friday (February 22)
This day will be for trimmers again, but painters can join in. Painters should bring work clothes and your favorite brush or two.

Saturday (February 23)
This day should be mostly painting and clean up.

There is a group of painters already planning to come Saturday.
A few more painters would be great.

There are a bunch of folks who already have been plugging away at the list of things to do and I am not sure what has been accomplished so far. [Ed. note: venting and vents have been installed for the bathroom fan, kitchen stove fan, and gas dryer.]

We have decided NOT to have a work day on Sunday, but instead to re-group, workup a "punch list" and attack it at a later date.

[Ed. note: such things as a three or four-person crew to blow insulation into the attic spaces. And things that we might have missed.]

I hope my lack of organization hasn't gotten in the way of anyone. I am trying to be a "spark" to help get you through the final slog of this project.

[Ed. Note: Let's plan on getting started at 9 a.m. each day.]

Kurt

[You can contact Kurt at his email address: country1@mhtc.net or call him at (608) 341-8137.]

The Snow Keeps Coming!

We began the day with a home eucharist as we watched the snow start to fall this morning after a few hours of drizzle. And came it did! We are expected to get 12-15" before the day is out. We were able to get out and get some exercise just before lunch.

You can barely see the barn with the amount of snow that is falling.
Aha... never a miss a moment to catch a kiss. Celebrate life everyday!












The Serenity Prayer has been on my mind during my morning meditation walks. Is that not the key to a God-centered existence; that we would accept things we cannot change and yet have courage to change those things which we can and should? And, yes, the wisdom to know the difference between acceptance and change.

The Serenity Prayer

God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world as it is,
not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life and
supremely happy with Him Forever in the next. Amen.

--Reinhold Niebuhr

Thanks to Everyone!

"I just want to thank all of you for your love and prayers! We will get through this and we can and will take one day and one victory at a time..." Sabine

Saturday Morning

Yesterday we had our second infusion on our second round of chemotherapy (for those who are following it is Velcade plus dexamethasone).

So far it has gone well with Sabine able to get some sleep with little nausea. We meet next week with the dialysis staff and would like to see if we can qualify for home dialysis in the future (we think it is basically 2 hours of dialysis 6 days a week).

The Tibetan Buddhist prayer flags are a recent gift from Sabine's sister, Barbara and her husband, Ken, who recently returned from Tibet and Barbara crafted these prayer flags from ink stamps she found during her travels. After all, we need all the help we can get and we all know just how BIG God is!

Sabine, despite her fatigue, is still able to get out at least once a day. We think (and the docs agree) that daily exercise is a good thing for the treatment program. You will notice our trusty wonder dog, Mocha Latte, in the foreground hiding behind the tree.

The woods have never been so beautiful as they have been this year. Our trails are criss-crossed with many deer tracks and we find an occasional round hole about a foot or so deep where one of our deer has bedded down for the evening (probably just after they go down and steal the corn from our geese!).







Sabine walks the center trail while I catch the climb and the cliffs on either our north or south trails. This is the year for snowshoes! I think we have about 4 feet of snow in the woods. And without snowshoes this year it would be impossible to walk the trails.














This is the view from our south hill looking towards Blue Mound State Park. The ever-present trail companion, Mocha, is surveying her domain. There must be a squirrel, turkey or deer out here somplace!

Our Valentine's Day

This is Sabine's Valentine to me.

"It's you and me all the way - kid!"

And inside:

"Happy Valentine's Day!

"The same as everyday:

"Always new -- Always different,

"And always with the man I love to the deepest breath of my breath..."


And my Valentine's poem to her (wrapped in a big heart-shaped balloon):

valentine’s day
what for?
who needs it?
do we need to remember?
to reconnect
i don’t think so!
as they say
everyday is valentine’s day
when i’m with you
everyday you warm my heart
everyday you give me yours
everyday
is chocolate with you


And to all you lover's out there -- each day counts!! Seize it... treasure it... celebrate it...

When is Pre-Paid Health Insurance Not?

A big part of keeping healthy lives in American today has to do with health insurance. It is the new class – those who have and those who have not.

But what about those who think they “have?” After all, we have been members of a health cooperative for over 25 years. Remember? We called them pre-paid health insurance programs. Well, they were partially right. Over the years limits and co-pays have eaten away most of the “pre-paid” concept.

Some of you may know of my relationship with money – non-existent – that is, don’t both me with it unless I don’t have any – then I am in a panic!

So, understandably, Sabine has handled our finances. She does the checking account, squirrels away money for vacation and travel and keeps me out of this alien territory.

When we were recently informed that our dialysis benefit was capped at $30,000 we were elated. That’s a lot of money. That is until we found out that the average annual bill for a dialysis patient was at least $100,000.

Now $30K didn’t seem to be a lot of money. Where would the remainder come from? Should we sell “the family farm?” But what about the second year of dialysis?

Thanks to a great social worker at the dialysis center and a dear friend that works at Social Security we learned that we must file for disability with Social Security and tie into the dialysis programs. When Sabine goes on Medicare the government will pay 80% of the remaining costs. But that still leaves $14,000 each year to be covered (and what about the rise in medical costs each year?). After all, we are both on a relatively fixed retirement income.

So, I started thinking, how many hours each week would I have to work as a greeter at the local Walmart store to cover the remainder?

But grace is found were grace abounds (who said that?). Sabine had purchased a catastrophic health insurance policy when she was with the State of Wisconsin and we found out today that they would be “the last payee” and cover the remaining balance.

Thank God! One less worry on this scary journey.

Thankfulness

you say you're sorry
to have to be so sick
you cry because you think
you are ruining my life

but you just don't get it
do you?
i mean you think that this is bad
this is somekind of a burden

you think i don't thank God for this?
this time of closeness with you?

yes are blessing times
blessings of a warm house
a car that starts
food on our table
our home and woods
and yes most of all
our friends and loved ones
who pray for us
who pour out their hearts daily for us

no this is not a curse
we are being blessed
blessed beyond are wildest hopes
blessed beyond all our dreams

it is the blessing of our first days
come once again
those crazy hapless days
when all that mattered was us
when each intimate day
we couldn't get enough of each another

Visitors

Who said we didn't have visitors




We had five guests in our pond pasture late this afternoon.




The geese were not impressed!

Things Come Together

So far, it’s been a very good day even though it’s snowing again! Sabine took her new and second-round chemotherapy at UW Hospital this morning, the GHC lab received the fax order for Sabine’s blood work, and I finished up a telephone interview with Social Security for Sabine’s disability (which also went very well).

But let me tell you about yesterday… I tried to find out precisely what type of myeloma Sabine has. I know she has “lambda light chains” which caused her kidney’s to fail but what about the immunoglobulins I have been reading and hearing about?

So I tried to get the question answered I wasn’t able to get answered by calling the hematology clinic. Hmmm… well the IgG, A and M were all negative… “But what about the others – especially the IgD which is a rare and very deadly form of myeloma?” Nobody could tell me… I even emailed Sabine’s primary care physician yesterday and asked her to check for me as to what the medical record said. After all, there has to be a specific diagnosis -- especially after all these tests.

And so, last night during and after dialysis, my mind wandered, I kept waking up in near-panic state. Why aren’t they telling us the specifics? Is it that bad?

The angel appeared this morning. It was at the chemo clinic when Nurse Dawn appeared to give Sabine her infusion. “How are you guys doing?” she earnestly said. As so I told her about not getting the information I thought we should, about doctor and nurse being rushed last week, and what seems to be a lack of coordinating physical (scientific) medicine with emotional support which those of us going through cancer desperately need. Did she respond! She ran and checked the records and gave us this GOOD NEWS!

The cytoxan chemotherapy which we thought had not worked had – there had been a 1/3 reduction in the lambda light chains (cancer).

Sabine does not have a rare form of myeloma but what is called “Light Chain Disease” not involving the immunoglobulins (which I feared).

She also called the psychologist (Mark Heiland) who is assigned to the cancer clinic to help families and patients adjust and cope with the cancer diagnosis. He came in (we had met him once before when Sabine was an in-patient), we talked, and then set up two appointments that coincide with the next week’s chemotherapy.

Bit by bit, pieces of this train-wreck seem to be falling into place. Lisa, our complex case nurse called and left a message checking in with us to see that things were working for us. Hallelujah!

So that’s my story. And, I think Sabine will be dictating a note for me to put on the blog on her behalf in the coming days… (a good idea, Sue, thanks).

Whew… it’s time for a nap.

The Week Begins

Schedule this week:

Monday: Rescheduling appointments and lab draws. Exercise and resting, then dialysis from 5:30-10 p.m.

Tuesday: Chemotherapy at 9 a.m., Social Security interview at 1 p.m., Cancer support group at 2:45 p.m.

Wednesday: Dialysis shifts from 7:30-11:30 a.m.

Thursday: Exercise and rest day.

Friday: Dialysis from 7:30-11:30 a.m., Chemotherapy follows at UW Cancer Clinic. (We will have left home at about 6 am and then have returned by late afternoon.)

Saturday and Sunday: Exercise and rest days.

(Let me add to this that a trip to Madison from our home near Blue Mounds is at least a two hour round trip!)

______________________________________

But Why Can't We Visit?

Some of you have chided and counseled me (gently) about the fact that Sabine is being isolated from her friends who deeply love her. We know that, but the situation we find ourselves at the present time does not seem to leave much time for visits.

We are struggling with finding a routine and routine has not been found. Between our many medical appointments, dialysis, chemotherapy, and lab tests we seem to be running from one appointment to another. When we have a day off it is more often than not spent resting and napping.

Then there is the matter of Sabine’s energy level with her tanked-out immune system, extremely low energy (anemia) and nausea and lack of appetite. As I have said before, the problem with being around Sabine (even if we set the immune system problem aside) is that her nature is to reach out to YOU, to focus on YOU to even take care of YOU when she needs (perhaps for the first time in her life) to focus on herself.

So, until she gets her strength back (and we are hoping and praying for at least some times when that will be the norm) it is not in her best interest to socialize.

Now, I may be wrong here and I am open to feedback on this, but as I see it now – that is, where we are right now in this treatment plan to arrest the growth of these vicious cancer cells – socialization is not her primary need.

Let me also say that this is not my decision alone. Sabine and I have talked and talked about this and it is her feeling that she does not now have the energy to engage with others.

Now as far as our psychological equilibrium and health is being maintained, let me just say that, as you can see above, we are planning on attending a cancer support group at GHC this week, and we talk and share our feelings on a regular basis. We also have scheduled in the monthly Madison Myeloma Support Group on February 19th. Unfortunately, both those days are chemo days and we will have to see how that goes…

Like I said, routine is not something we have found as of yet… We deeply thank all of you for your love and concern and continuing offers of help.

I see this as a long, long battle. We have been through D-Day, we are on the beach, but victory is a long, long way ahead. Consider yourselves as being held in reserve. We will need you in the future. Be steady… Hold on.

Homily in a Poem

While snowshoeing through 8” of new snow in our woods (my “alternative” church) and the busy week we have ahead of us (a second round of chemotherapy and a change in our dialysis schedule), I was led to think about the gospel for this Sunday from St Matthew (4:1-11):


On the First Sunday of Lent

is this what you meant
by the wilderness, Lord?
is this what you meant
by your Cross?
if it is I understand
I see the picture, Lord
my seminary theology
now becomes real and
yes, let it pass, Lord
just like you asked of your Father
and I can utter your will be done
just like you said?
all the while, knowing, just like me,
that loved ones are being lost
and the future is unclear

A New Poem and Three Very Old Ones

we talked
today
surrounded by huge white
cotton-ball snowflakes falling from the sky
why are we not angry?

shouldn’t we be angry?
this life suddenly shifted
is it because we have the fulfilled life?
a life rich in blessings?

shouldn’t we be angry?
this life of ours forever changed
t-boned and veering out of control

maybe it’s because we realize
our passing nature
the we are all deadmen walking
but for us the in-between
has been so wonderful
so complete

yet as we talk
our tears begin
to fall with the snowflakes
why this sadness?

why?

we are two children
playing on the merry-go-round
it is so much fun
we squeal with delight
the calliope music
the whirling galloping horses

and we are sad
so sad
when mom and dad say
come on, you two, it's time to go

___________________________

From Sabine’s 151 Poems, that I wrote and presented to her as a gift on our wedding day.


Number 11

when you decided to
look at me
did you think it would happen?

when you decided to
talk to me
did you imagine
that this would follow?

when you decided to
touch me
did you understand
that you would never leave me?

_____________________________

Number 5

you don’t understand nor realize
the immensity, magnetism and pull
of me to your self my alter body

you refuse to hear words
mere sounds
easy to say you say

you won’t listen to my special sounds
deep you-sounds
if you won’t hear my words
listen to my body

hear my touch
my exploration of you
listen to my eyes
my heartsounds
hear how I hold you many hours after
hear
you must hear my tenderness

it’s just not fair
you’re not listening to my words
and
you’re not hearing my self

would you please stop a moment?
and
look way ahead
and notice that I’ve been with you
all these
many years.

_________________________________

Number 150

hildegaard luise
drifting dreaming
passages and trails
through the interstices of my mind

you carry your heritage
like small tiny gemstones
in your open palm
as you wispily brushtouch my lips

hildegaard luise
your laughter and
strength
cover-conceal your delicate
inner vulnerability
and startling beauty
a thin floating airy shell
translucing quiet evening light
like a silken shadowy veil

hildegaard luise
only I know this
of all who have known you
and this perhaps frightens you
and you are hesitant
like a newborn wood fawn
to materialize your substance before me
but I will never hurt you
never bruise your fragile self

your fragrant vaporous being
covers my body
myself
my insecurity
with the complete knowledge
and sense of you
but when I reach out
to hold you
you
sift between my fingers
as spring morning fog
disappearing softly

and I quietly
longingly
wait for you again

but next time
I will capture you
hildegaard luise
breathe you into my lungs
and intermix you
into
an amalgam
of our two selves
separate yet together
but
we will never be alone
again.

From Head to Heart

This cancer stuff is a real emotional and physical roller-coaster. We, of course, wanted better results on Wednesday. And now it looks like we are entering into a deeper, and darker cave with the second round of chemotherapy and the realization now that the kidneys have for all extent and purposes been written off.

What I wrote on Wednesday was writing from my head – and that always sounds so much better on paper (or on a blog). But I haven’t really gotten my heart around all this yet -- and that is what is hurting right now.

We go down to the Cancer Center and sit in a room with a bunch of other suffering people and everyone is frightened – I think I can probably cut the fear there with a knife. Sometimes I feel like I am watching one of those old zombie films.

And so we enter into the consultation room, a nurse checks Sabine’s vitals and the doctor comes in and reports. Everyone seems to be running late and we all must hurry. I have a legal pad full of questions that I am trying to get answered. They weren’t. It’s time to go… there are other patients… (I want to scream, "Stop, there is a person here who is dying. Listen to us!").

I know someone must be around the Clinic who has the job of handling the emotional content of patients and their loved ones. No one has suggested this until we talked to Dr Williams today. Yes, they do have staff people who handle the emotional side of this and she will call someone and make an appointment for us… Thank God!

But whoever cares for the emotional/spiritual side of the patients and their caregivers is not a visible member of our treatment team. Why is that?

Our coverage is a maximum of $30K for dialysis. (That’s about 4 month’s worth). So, I spent most of yesterday filling out disability forms and histories for Social Security.

I also called Lisa, our GHC Complex Case Manager, and told her about what I feel being in this system… Afterwards, I had a good cry.

This morning we met with our new primary care physician, Dr Deb Williams, at GHC. She spent some time with us. She listened to us. And even had some suggestions about the situation we now find ourselves. I think we both felt better.

Is this all about my control needs? Am I different from other caregivers in that I want to fight this thing – protect Sabine? I want to know what is going to be our greatest problem (and that which I need to be wary of) – is it the kidneys? Other organ failure? Bone damage and pain? Infections? I don’t need a precise map of the future, but I do need some landmarks.

I am really looking forward to getting in with our area myeloma support group (they meet on the 19th in Madison) and some other kind of caregiver support.

Yes, I am having a tough time in this – but then compared to what Sabine is going through (both physically AND emotionally) I have nothing to complain about. But I do know that if I am to be of help in this reluctant journey, then I do need to find care for myself as well.

I have got to get over being so sad. It’s not that I feel sad all the time, it’s just these periodic waves of sadness… and struggling to open the mail…

Thanks for “listening” and thanks for your continuing prayers and support.

Our love goes out to each one of you!

Round Two!

Today was quite the Ash Wednesday (I wish some of those ashes were on the road as we went twice to Madison in this 15-18" snowfall! (My boyhood training driving in Minnesota stood me well!).

We started out this morning with an appointment and consultation with our hemotologist/oncologist, Dr John Sheehan. "Round One" of chemotherapy is over -- it was an attempt to save Sabine's kidneys and reverse the acute failure. It did not work.

So "Round Two" begins next week with more chemotherapy. This time it is to be directed at reducing the number of cancer cells in her bone marrow. She will be taking VELCADE (bortezomib) twice a week by IV at the Cancer Center and oral dexamethasone once a week. There is a possibility of some significant side effects.

There will be two weekly cycles of this chemotherapy and we, as before, will have to be on guard against infection and contact with groups of people and crowds as well watching for bone pain or any more bone deterioration.

It looks like her kidneys have failed. But not entirely. So hemodialysis will continue to play a major role in our life -- but, as I said before, dialysis does not have to BE our life!

Because of her high heart rate an echo cardiogram will soon be taken to make sure none of the output of the myeloma cells is affecting her heart.

I don't think that I have ever spent an Ash Wednesday that had in it all the marks of the Christian faith for me... For it was Jesus who said, "Unless one denies himself, he cannot be my disciple."

After we got home from our first trip to Madison and thinking about what Dr Sheehan had said, and what lies ahead for us, Sabine said to me, "I am so sorry to have to put you through this!"

So I looked deeply at her and from the very bottom of my heart I replied, "I've always just wanted to spend time with you, and now I have the opportunity to put most everything else in my life aside, all my distractions, self-delusions, and self-centeredness -- and be totally with you; that's a blessing!"

Ashes can go from head to mouth to heart...

Ashes

Today is Ash Wednesday.

We get up... slowly. Another snow is underway. To the University Hospital... to the Comprehensive Cancer Center. To sit and wait with others. Those with the shallow looks of chemotherapy... those who keep their heads bundled... waiting... hoping...


Ash Wednesday

did Easter bring you sure and certain nope?
did Christmas birth God in you?
is today
your grief and sadness?
ashes falling
from head to mouth?

A Good Day!

We beat the snow today! While the forecast is for 8-10 inches more of snow we still we able to get to the UW Hospital this morning, have a successful surgical procedure (the tunnel catheter) and return home just as the snow is coming in from the west.

It’s good day to hibernate… take some naps and prepare for our meeting with our oncologist, Dr Sheehan, tomorrow. Sabine is a little weary but up in spirit.

The dialysis went well last night and we sadly said goodbye this morning to Ken and Barb who (after a month with us) returned to Missouri. We couldn't have gone this far without their love and presence. They will remain "on call."

Thanks for all your prayers and offers of help. We knew we had wonderful family and friends -- but now we know just how wonderful you are!

Reflections on a Winter's Day

It is difficult to describe the general malaise that I am experiencing (which is not much when I compare it to Sabine’s situation). The only thing I can connect this feeling to is that of a “flight-fight” response when all of our blood goes to our major muscles in anticipation of a threatening event and there is nothing left over for other body functions – like thinking, planning, problem-solving, and sorting the mail.

I feel drained and I hopefully, expectantly look forward to some kind of recovery. At the present time, physical exercise is tedious, I can’t get excited about sword practice and the thought of leading a parish and responding to its pastoral needs is emotionally crippling.

Sounds like a depression, yet I am sleeping and eating (perhaps too much) and I still can get some things done around the house and make our many and varied healthcare appointments.

I feel like we exist in a “never-never” land of never knowing. I know (and can make fun of) my control needs but this is truly an “out of control” situation for both of us. This came on us and at us during the Christmas and New Year’s holidays like a freight train.

I think I am working to preserve my strength for the battle that I know looms ahead of us. I don’t want anything to divert or drain off my ability to fight this thing with Sabine. What exists beyond the immediate presence is a place I don’t even want to think of. And when I do it is frightening and paralyzing. I simply cannot imagine my life without her!

I know that I have missed a couple of my grandkid's birthdays… I can’t answer or return phone calls because I just get choked up. I feel bad about that -- but this is “circling the wagons” time and I feel I must focus on Sabine and the situation in front of us. I wish I could say that I know what needs to be done, but I don’t – not now. Maybe next week or next month, but maybe never, as this disease can pop up in strange places at inopportune times.

This coming week is round two in the cancer fight. We know now what we are fighting and I try to scan the treatment field by participating in a multiple myeloma list-serve on the internet. It is probably more overwhelming than comforting right now. We are looking forward to attending a local myeloma support group on the 19th.

Through her fatigue and anxiety Sabine continues to plod on. I can’t imagine what it is like to have to be hooked up to a machine three times a week in order to live. And while she struggles with the kidney failure she also contends with chemotherapy and the unanswered questions about where we are now and what’s next? She lives each day with little time bombs ticking in her body.

And then there is, of course, THE question that has not yet been uttered: “How long does she have to live?” At the same time I know that none of us are guaranteed any time except that of this moment. So, “How do we live each moment we are given?” All of a sudden, that becomes the REAL question of which we all know the answer! We walk in love...

I quipped the other day, “Well, if we had to have cancer, this is probably as good a time as any, the kids are grown up, we are retired from wonderful and satisfying careers in policing, and we have completed all the international travel we wanted to do. I guess our life’s direction now is to fight this cancer!”

So we talk, we re-frame our situation, we remember all the blessings of this life, we laugh, and we cry – but most of all we go on!

And yes, God is with us every moment – the “breath inside the breath.”

I took comfort this morning in this prayer from the Episcopal Book of Common Prayer:

This is another day, O Lord. I know not what it will bring forth, but make me ready, Lord, for whatever it may be. If I am to stand up, help me to stand bravely. If I am to sit still, help me to sit quietly. If I am to lie low, help me to do it patiently. And if I am to do nothing, let me do it gallantly. Make these words more than words, and give me the Spirit of Jesus. Amen.

Thinking About Next Week

We are at the dialysis center near Madison (on Fish Hatchery Road). We are getting quite used to the place with our Monday-Wednesday-Friday appointments from 5:30 to around 10 p.m. I think it is particularly difficult to do dialysis and also be going through chemotherapy. It takes a lot out of Sabine (but, of course, those of us who know and love her know that she is not only a "tough cookie" but a positive cookie as well!).

As I mentioned in an earlier posting, we do three intensive days a week of lab work and dialysis and then we get Tuesdays and Thursdays and the weekend to rest up.

Next week begins with the usual lab and dialysis and then Sabine goes into surgery for a more permanent "tunnel catheter" to facilitate her dialysis. Then on Wednesday we meet again with Dr Sheehan, our hematologist/oncologist at the U.W. to see how this chemotherapy has progressed and, hopefully, some idea of what our next steps are in trying to curtail and control this cancer of the bone marrow.

At the same time, I know that we Christians are going into Lent -- Wednesday is Ash Wednesday, the beginning of the Lenten Season -- a time for reflection and reparation.

As we pray for one another, let us in fact "keep a Holy Lent" as the Ash Wednesday liturgy asks of us and that the ashes we receive on our foreheads (and I think they can also mark our hearts as well) remind us that we are "dust" and to dust we shall return. Life in this existence is finite.

David Swanson, a member of my Japanese sword club sent me this. It is a translation by Robert Bly of the Indian poet Kabir:

Are you looking for me? I am in the next seat.
My shoulder is against yours.
You will not find me in stupas, not in Indian shrine
rooms, nor in synagogues, nor in cathedrals:
not in masses, nor kirtans, not in legs winding
around your own neck, nor in eating nothing but
vegetables.
When you really look for me, you will see me
instantly ‑
you will find me in the tiniest house of time.
Kabir says: Student, tell me, what is God?
He is the breath inside the breath

What I have learned with this illness is that every day matters. And every day we have is truly "the first day of the rest of our lives" and, yes, God is "the breath inside the breath."