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

Good news anf great fun.

So I got to spend 4 days with my dear aunt and uncle - they drove from San Francisco to Portland just to hang out with us. Wonderful!!

On Thursday, they returned to the bay area, Then the CT scan was done, then Thursday evening my 2 youngest kids, and 2 of their friends all flew to Portland.  Bliss!!

Friday - yesterday, the kids saw the infusion room, and they felt a lot better about where and how I was getting treatment.   Friendly, efficient, compassionate nurses with a sense of humor. Bright, big windows, with an awesome view of sun setting on a snow covered Mt. Hood, with that delicate pink color of this time of day and this time of light.

Oh, and the CT scan showed NO new lesions, and a 25% or so decrease in volume of the liver mass.  Looking like two more rounds of chemo, then maybe liver surgery in late January.  Very very good news.

My eldest kiddo is gonna be here 12/27, so everyone but her hubbie, D, will here be together.  Wish he could come, but I understand he has got other family members that need his presence this season.

Hope you are all enjoying this holiday season - I am being so blessed, it is ridiculous.  God remains steadfastly in love with us.  As I am learning, it is the presence, not the presents of loved ones that brings the joy. 

Finally back to writing

Hello:

The last 3 weeks have been more challenging than in the past. I am finishing up the 4th round of chemo, then Thursday a CT of most of my body, then more chemo starting Friday. and maybe a decision about whether i need surgery for the liver mass.

The frustrating change was adding neulasta - which increases the kind of white blood cells that fight bacterial infections -  it retails for $6000.00 per shot, every two weeks.  Whew!  And it makes me really tired and crabby and feeling like I have a bacterial infection for about 5-10 days....  

But another thing that is interesting.  There is like NO sunlight here most of December -  they call any sightings  "sun breaks" -  and I was getting pretty disheartened.  So I tried a therapeutic light for seasonal affective disorder.  Not only did my mood improve, but so did energy, and the neurocognitive testing, the results of which had been low and stable over 3 weeks,  shot up by 10 points the first day,  15 points the first week of light therapy.  (So if I use this daily for 5 weeks, I'll be smart?)  Gotta see if there is any cognitive data for using light therapy.

Went to Yoga today, and realized that there is ototoxicity from at least one of the meds.   The teacher, who has a wonderful British accent, kept telling us to roll up in a fecal ball to stretch.  Sounds gross to me, but I am new to yoga. Finally I asked her - she mean "fetal ball"  all this time.

Hope your are having a great time this holiday season. And taking time to give yourself and those you love your presence, not just presents.

Chemo in the rainforest

The chemo cycle continues.  Trying to live life deliberately and "normally" in the context of the abrupt leaving the practice, selling the house,  moving far from 2 of my kids, changing from doctor to patient role, ... it's been kinda weird.

But so much support from other people!!  visiting and emailingt and facebooking and praying... THANK YOU!

So to add some normalcy, I made the traditional cookies for the kids and my brother and mailed them off.  Strange even having to make friends with a new oven - cookies can be persnickety.  

Anyway, after my daughter A visited and sampled them, I felt like Martha Stewart, but without a rap sheet.  

Cognitive issues remain frustrating, but my doc here is interested in a research proposal I wrote up. To get neurocognitive measures throughout the chemo cycles, then see what the effects of interventions such as continuing oral calcium.  An IV bolus is given just before the oxalliplatin to minimize peripheral neuropathy, but there does not seem to be anything in the literature about the cognitive effects of the chemotherapeutic agents for gastrointestinal cancers.

Anyway, I am doing a computer based test battery on myself every few days, and also doing a new york times  sunday puzzle each morining - limit 45 minutes, no using the internet, oh, and a daily sudoku - timed.  All I need is to add Tetris to get a measure of visuospacial effects.