100 % survival at 2 years from diagnosis... as of May 18th

Hello, dear readers:

Thanks for your patience.  It's been over a month since the last blog.

Today, a milestone has been reached - 2 years since the original cancer diagnosis, and almost 8 months since the liver metastasis diagnosis.  And I still get to be here, able to hike (3+miles today) and bike and go to yoga and do nice things for B and the kids, and....  Happy dance!! Celebrate!!  Delight!!

It would have been fine if God had already taken me home ("To be absent in the body is to be present in the Lord".)  AND YET, I am totally grateful to have had these 2 years on earth.  2 years to "walk by faith, not by sight, " To ride my mountain bike and hike and do yoga, enjoy the amazing crazy beautiful spring flowers and birds here - well, at least hypomanic beautiful.  I got to be here for my son E, for his senior year of high school and first year of college. Now I get to relate to him adult to adult, and just enjoy his sense of humor, his caring heart, his singing, his continuing growth as a human.   And to get to visit daughter L in Berlin, meet her friends and housemates there, see her growth as she finishes her master's degree, to pray for her, to enjoy great Skype conversations - turns out we get to talk a lot more, now that I am not working 800 hours per week.   And daughter A, well, getting to spend time with her by phone and in person, enjoying her kindness, her quick wit, her amazing loyalty and love, her persistence in going to college while also working a very stressful nursing job at a prison....     

And being able to live up here in Portland with B, after a year apart due to his job transfer and my need to continue to have health insurance. I stopped taking for granted being able to have him next to me at night.  Even little things like doing dishes and folding laundry are no longer chores but rather opportunities to be kind to him.

Not to mention getting to bask in the love and support of my extended family and friends and former patients.  So many calls, letters, emails, gifts, kind thoughts, prayers!  It is humbling to be on the receiving side of such grace and caring and concern.

The final scheduled chemo cycle is June 15-29.  No word yet on what happens after that, treatment-wise. 

Every way I have come up with to say thank you to you all just doesn't express the depth of gratefulness I feel for you.

L's Birthday! I thought I posted this in April! sorry about the delay

Happy mid-April!  

Deepest La Nina in known history, I have heard.  So we are still having high temps in the low 50's, and a lot of blossoms are delayed.  This morning, there was sunshine for maybe 2-3 hours.  Making the best use of it, I lay on the floor in a sunbeam.  B asked if I was ok - so I purred. 

Week 3 of 2nd 12 week chemo cycle. Harder this time side effect-wise.  Maybe that 40% of liver was metabolizing things better last time. But overall, so so much easier than so many people! My memory, especially verbal and visuospatial, are sinking back into the pit again. and oh, attention...  I can tell by the scores on the weekly cognitive testing that I cannot work now.

The hardest part for me that I have not really been contributing to other people much.  I had really felt that my Arizona practice was helpful to others.  I love how so many people with psychiatric issues get better and have major improvement in their lives if we can just get them treated.  But how much was for the patients, how much was for me to feel better about myself or looking good,  and how much was really serving God by helping others?  Even our best attempts at doing good are not purely motivated. Grateful that I do not have to earn God's love and grace. Astonished that He would love me, despite myself.

The weather is so big and so rapidly changing. today on a 3 mile walk, it was sunny and bright, then by the turnaround point we were in dark gray clouds, then hailed and rained upon for the last mile.  Just as I got got dried off, it became, you guessed it, sunny again.   But we have been spared of the horrible tornados in the southeast that were the result of the atypical Spring -   I grieve for the people who have lost family, and homes, and health...

My middle child, L, turned 24 today - how is it  possible for time to go so fast?  I just got a postcard from the Cliffs of Despair (think Princess Bride) from when she was in Ireland and Wales and England this last week.  Apparently she had so much fun that she has not slept in 2 days.  Should be interesting when she gets back to the lab in Berlin tomorrow.  I cannot describe how wonderful it is to have her be so happy and doing good work and loving life and being adventurous. Life as a mommie doesn't get much sweeter than that.

My older daughter, A, is in the trenches currently, so life is not so easy for her - working too many hours at a prison. She is somehow giving excellent care in a crazy setting, and keeping good boundaries in the land of "what's a boundary?"  Oh, and her schedule with college is all goofy, due to a local AZ hospital chain that used to rhyme with Bavaritan having suddenly cancelled or changed clinical rotations for more than one mursing program in the valley. Everyone is unsure if they will be able to progress and graduate on time.  And her program has been doubling up on weekly classes, just to add even more stress.  But she perseveres. An amazing woman.

My son, E. Well, he is having a great time in Flagstaff.  Lots of good friends. He has not been, uh, burdened with the internal drive to get good grades and all right now.  But the man is 19.  Better to figure out who one really than to do work that you hate.  Plus, he is not having to support anybody but himself now.  I do get to see him next week for a visit up to the great northwest.   I am so psyched!

And my son-in-law's band stayed with us last weekend - had a tour that led them through Portland. I had not heard them in 6 months.  They were really well recieved here, and they earned it.  It is wild how their musicianship, both  individually and as a group, continues to grow. Usually bands either don't stay together long enpough to gel, or they stop growing musically, or both.  I am darn proud of those guys. And so glad that got rid of their first drummer (me). 

 grape hyacinth - intense! 

Daffodils getting bored of  a lecture.

Springtime without sunshine?

It has beeen the cloudiest, rainiest, coolest March on record.  But still beautiful.  Flowers, flowering bushes, flowering trees - as a dear friend of mine said years ago in Connecticut - "it's rather garish."  I LOVE IT!

And with late March came our 30th anniversary, and my 55th birthday - same day.  At the wedding, my mom softly sang to me: "she turned 25 in prison doin' life without parole..."   But God has given us over 30 years to bounce off each other, break off the sharp edges,  learn to show grace, and to love each other   B. is much better at this than me. I am so spoiled.  What a wonderful gift!

Oh, and particularly given the medical stuff, making it to 55 years of age is now a cause to celebrate - and I don't mean just the senior discount at Denny's.

Life right now is this weird mix of wanting to live every minute fully, and wanting to take a nap - the chemo started again, and the neulasta, which repleshes white blood cells so I don't get horrible infections,  is kicking me in the behind... and my stomach, and my muscles.     Only lasted 1/2 of yoga class.  But the CEA (carcinoembrionic antigen - a tumor marker) went way down.  YES!

Taking two classes about the Chrisian faith currently - for college credit, so it forces me to take the classes more seriously. One on "the Great Commission" has been a special delight.  The professor spent over 25 years in Nigeria, and still goes there often. He lived with the people there, sharing their joys and sorrows, farming with them, having long talks with them, often under a tree, learning to really love the people and understand their culture better than so many.  I see the new wave of the past 30 years of church missions as being a real revolution,  based on the "native" missionary movement.  Learning and respecting people's cultures and lifestyles.  Falling in love with people from very different lives. Letting them see God's love in action through one's one life. Letting all people hear, at least once, the gospel, so they can make their own decisions. And supporting new local Christians who choose to build a local, self-sustaining and self-propogating, culturally meaningful church.

Wow,  I sound like a radical.  

But I cannot help but want to share the good stuff that I have been given. And for me, being a Christian is the very best stuff.

Hope you like the pictures of the trip to the coast for our anniversary.

Gotta go - B just repaired and replaced the parts on the electronic drum set for me  - let's see what the neighbors say now!

Bald is beautiful?

3 weeks today since surgery. They took out 40% of my liver, and also my gallbladder. Why the gallbladder, I asked.  "It was in the way."   Just glad that my heart is in the right place.

(This blog was interrupted by the aroma of freshly baked bread, made from wheat that my husband B. ground earlier today, then topped with grape jam that B. made from grapes grown in our backyard this summer. Yes, I am spoiled.)

Ok, back to blogging.   Grateful that the healing is going well, grateful that my liver is functioning. I even got out of the hospital 2 days early. They put me in the surgical ICU for 2 nights post, op.  My room's window opened to a bus stop about 5 feet away, at the level as my room -  not a lot of privacy.  

I was treated well.  But an ICU is full of weird noises and lights day and night, and with me having 2 iv's, a central line, a second central line by the port implanted in October, nasal cannula for oxygen and a Foley and automatic pressure cuffs on both lower legs, oh, and an arterial line, it was not a relaxed setting.  How do people without any medical experience cope with these things?   At least I knew the names of all of the lines, so I had the treasured illusion of some control and normalcy.  I was not really scared until I woke up with all these attachments.   Hydromorphone, take me away! 

Now back at home, walking 1-2 miles per day, I am really doing rather well.  There is a lot of fatigue - it takes a while for the liver to regenerate.  Lots of naps. Mmmm, delicious naps.

Portland's weather is mostly cloudy and rainy, but there was some cold days, with lows in the teens (Fahrenheit) and some snow. But now there are blue jays and robins and daffodils starting to bloom, and trees budding...  and no chemo for another 1-2 weeks.

The overriding feeling has been gratefulness.  Hope all is well with you, too.

Tomorrow is the big day for healing - tonight is for whining about the bowel prep

I have just got to thank you guys for taking the time to read this blog.  It has been rather intermittent, and pretty much all Gussie-focused. But you have been gracious about that.

I have been so very blessed by God!  Physically strong despite that cancer- I did yoga for an hour today, and walked briskly for over 3 miles, took a midterm in the college class on the second half of the Old Testament.  And I absolutely loved that I got to talk to and get texts from so many precious family and friends throughout the day.  Thanks!! 

The bottom line is that God is in control - what a relief!   I am trying to do my part of getting healthy, but I totally trust the Great Physician to take care of me. It feels so nice to be so loved.

6 days to surgery

So today I met with the surgeon and his team, and the pre-op people, and got examined and talked to and got blood work and an ekg...   Everyone is all excited about this... well, except me.  I am a bit ambivalent.  How about it I go to sleep now and wake up in March?

From a medical point of view, it is great to know that there is one resect-able lesion than got smaller with chemo, which puts my CURE rate post op at over 50%. So it is great news.  Just find my mind going back to the last major surgery...  This time, they told me to expect to wake up in the ICU... have to think about the benefits, about going forward, and how this surgery may allow me to get all the way better.

My husband will be allowed FMLA time off to be there, and my eldest, A, will be here from 2/13-2/16!!   So I will have great support.

The days are getting longer - over an hour longer already, compared to late  December. When the sun shines, the sky is SO blue!  And the bitter cold seems to have moved to the Midwest and the east coast - sorry for you guys!  Hope you are all staying inside, sipping coffee or hot chocolate, reading or playing board games... and not having to try to drive to work/school.

Thanks for your prayers and thoughts! God is so gracious, even when we get whiny.  Amazing.


Well, I have used up more than my share of ellipses, so....   bye for now!

Happy 2011!

Long time no blog.  I apologize.

Christmas time with the kids here was wonderful beyond words. And intense. and I realized that one's  endurance is less when one is getting chemo.   I need more rest than I used to...

So my youngest left a few days ago - back to college.  I miss them so so much...  but I am proud of them all jumping into the world and choosing to really live out their passions.

 So it is just Bruce and I here, and he is working 13 hour days...    But Bruce spontaneously suggested I adopt a dog after the surgery and maybe after the chemo....  YES!!!   Gotta check the local Labrador rescue hotline.   which kind of lab this time?

Medically,  the next chemo cycle will start about a month after the liver surgery.  Liver surgery is scheduled for 2/8/11. Left hepatic resection.  Basically cutting out the left side of the liver.  It is a bigger deal medically than I expected.  (Denial can be a very comfortable place.)   I should be in the hospital 5-7 days, and get a second central line in addition to the " port" central line access that  I already have for the chemo.  And I was told to  expect at least a day or 2 in the ICU post op and physical exhaustion post op...   

So these next few weeks are about losing some weight, decreasing fat intake and exercising more to optimize liver function.  Then after the surgery doing the same as much as possible, so the liver has the chance to regenerate to full capacity. 

This is spooky. especially since my brother died of liver failure related to fatty liver and obesity...  But I am not him.  and I do not look good in orange. and I have not had 4-5 heart attacks by age 55, and I have never had diabetes... 

How I do want to be like my brother, is to reflect God's grace and peace through my actions as I go through these next weeks and months of medical stuff. To not be a whiny fussy baby.  Although at times, that does sound pretty justifiable.

Hey, there is not only a sunbreak, but a whole bunch of blue sky!!  Gotta get out and hike around..  Never waste a good crisis, er, sunbreak!

hope all is well with you -

Gussie