Post surgery restrctions lifted

 
Met with the surgeons and am now cleared to start working out in the gym, take baths, fly on a plane, but not to play golf.  How did they know what a bad golfer I am?   We've never even talked about it - although several of my closest friends have tried to tell me.

Arctic air is a challenge on the lungs so Deborah and I have been doing some mall walking. I went to my first bike club meeting since surgery seeing old friends who may wonder what I look like.  Answer: hair thinner but there, get out of breath and need to sit down sometimes, generally good.

Pathology of lymph nodes and other results as expected.  Chemo is described as  "a mop up" operation.  Checking back every 3 months for the first two years to make sure nothing microscopic escaped and migrated to other places.  So far so good.  Doctors optimistic but warning me that I have had two major surgeries so recovery needs a few weeks added on to be realistic beyond the 6-8 weeks they usually estimate.  

So I will keep walking and get started on a stationary bike and light weights, either at the gym or at the house.  An actual outdoor bicycle is still two months away but there may be snow flurries out there tomorrow and who wants to.....anyway!

Now driving with medical permission although I have discovered it is difficult to parallel park when you can't turn your head and body very well.  And it is difficult to drive in "ice fog" - current Portland weather conditions.

Seeing the chemo doc Dec 19th - down the hill. Once he's signed off, the way is clear for the final two rounds of chemo after Christmas and into January.

Deborah and I plan to spend a few days around Xmas at the base of Mt Hood  with Jess and Nicole, Dana and Meghan, and Jono plus friends - ....letting the skiers ski and the rest of us spa, veg, read and watch movies - and maybe snowshoe. 

Hope you are all enjoying the countdown to the holiday season!

Slow and steady wins the race

Progress is measured in small increments.  So I am walking 3-4 times a day, from one long block to five blocks at a time, encouraged by family who have been  here to help me and to celebrate the holidays.

The aggravations are often the least expected.  My right  leg hurts behind my knee when it gets tired.  Solutions: put a bolster support under it when sleeping and, finally, getting a leg massage, relief that does not require a doctor visit or another pill.  I wake up at 4 a.m. sometimes.  Solution:  take a pillow downstairs and doze off sitting up on the couch for an hour or two because rest and sleep are integral to healing. 

Even if I do not institute exercise walks, always agree to go with anyone who offers to go on one.

Embrace and enjoy the distractions of family and friends especially these last two weeks with conversations about wedding plans, concerts, work, good books, and other non-medical topics.

I know I am healing and breathing and sleeping better.  I am healing up so I can go on to the next two chemo treatments in my plan once the doctors okay it.   One step at a time up the hill is realistic, even with the setbacks. As this holiday season continues I hope each of you gets as much joy out of your circle of friends and family as I do from mine.

It Don't Come Easy

The old Beatles song keeps rattling in my head this week.

Lynn's recovery is tough, but so is he. One week out of the hospital and his scars are fading and his mind is clearing. Once the shock of having two surgeries finally got through the systems starting to protest. This past week was one  of checking back in with doctors to recalibrate medications, respond to new  challenges and be reassured that the after effects would subside shortly.

Deborah got to take a 3-day break from healthcare adventures. Lynn's sister Elizabeth and our daughter Dana came down from Seattle to stay at the house. Deborah went to Austin for the VIP opening of  "The Thinkery", Austin's Children's Museum newest iteration.  The museum moved from downtown to a great location near the Children's Hospital with room for outdoor play and lots more tinkering.

It was great to wander around Central Texas, catching up with friends, walking the Town Lake Trail, seeing the Museum's terrific new building with its water play areas, cement pigs, exhibits and climbing ropes, eating as much Tex-Mex as available. Austin as always has terrific art to share - this time "Thirst Tree" caught my eye as it loomed up on Lady Bird Lake near the walking trails, to remind us all of the tree lost to the Texas droughts.






I intended to return to Portland in time to celebrate Elizabeth's birthday Friday, but planes and weather conspired, and I got home at 3:30 am Saturday morning.

Lynn is working on all the recovery elements - deep breathing, short walks, and regaining strength. He is helped by friends bearing good foods and flowers, as well as phone chats. Grandma Joyce arrives Tuesday for a week of Thanksgiving adventures and lively conversation. And then we'll return to see the doctors early December to talk about timing for next step chemo treatments.

Wishing you all a terrific Thanksgiving/Hanukah week ahead!

Back home in my own bed after 11 days...

son Jono and Deborah went to a broadway show while I stayed home Saturday evening with neighbor babysitters watching college football on mute. Then to everyone's amazement, especially mine, I slowly walked up two flights of stairs to my bed. Got up the next morning when I wanted to, with no nurses waking me, to a pancake breakfast with Jono before he took off again for China.

Recovery is one of the toughest things I have ever done. But being home makes the next trip up the hill seem more bearable.

In early December the surgeons will decide when chemo starts again. Meanwhile keep those good wishes coming.

Post Surgery once again!

All went well with the lung surgery Tuesday and Lynn is now hanging out with the nurses in ICU. The radiation and chemo had done good work on shrinking the tumor  - so well that the tissues were a bit difficult to take apart. The surgery itself was longer than expected (I got a few additional chapters reads from my sci-fi book while waiting), but the doctors were very happy with the results. The nurse reported that Lynn's been telling law school stories in ICU and is getting good drugs to stay ahead of pain. Thanks again for your kind thoughts and good wishes!

Hospital time

So Lynn and I are enjoying a quiet moment in his hospital room. Rarely quiet here! Constant interruptions. Doctors, nurses, food deliverers, pt and ot trainers.......and a string of friends who work here or live in our neighborhood and know their way around OHSU. All is going well. It's a sunny day (in a rainy season) and Lynn proudly tracks his progress on the white board in the room by adding stars to demonstrate meeting each of his goals .Goals include walking up and down the hall, sitting in a chair, taking a shower. All pretty mundane you'd think, but actually really important and cumulatively quite exhausting.

Here's a great  painting we see as we make the hall loop, past the main nursing hub.

It's a view of Portland's Union Station/local Amtrak station, with signs to "go by train" and "go by piano". There's a keyboard in the pt room, alongside the treadmills and sports equipment, so it's very fitting.

And here's Lynn (with the scar!) by the fish print he sees on his regular hall walk.

Countdown continues to Tuesday morning's lung surgery. For all of you who have forgotten your high biology factoids, the left lung has two lobes and the right lung has three. Lynn's surgery is focused on the right lung, to take out wherever the tumor invaded - likely the middle lobe and maybe part or all of the top lobe. This could add up to as much as 25% of total lung function removed. It means a new scar where the docs come through the ribs on the right side. And it means a new recovery. Likely another week in the hospital , hopefully home around Nov 18-19.

Lynn appreciates all the support and visits. So do I!

Successful bypass

As of early afternoon, Lynn's heart is way more efficient, using three bypasses thanks to some grafting and the skills of the surgeon and his team. All is well, and Lynn's resting in the Intensive Care Unit....not yet awake, but looking good. Hats off (once again) to Oregon Health Sciences University for great care and some very family-centered support during the operation. Jono and I hung out in the various comfortable (and well designed) waiting rooms inside the complex - first the Surgical Waiting Room which has a "leaderboard" that tracks patient progress from being wheeled in to being wheeled out of surgery with this fancy color system. Then the thoughtful calls from a nurse inside the Operating Room, patched right to my cell phone - letting me know where the team was in the procedure.....and finally, in the ICU, where the most able of ICU nurses gave us the rundown on all Lynn's vitals and calmly explained the recovery process ahead.

Lynn's brother-in-law Gordon sent us the bypass photo above. Marta and Gordon's daughter Adrienne sent us the photo below in a get-well a card Lynn received from her last week. We think this sums up Lynn to a t: a Tough Cookie!

Thanks for all the thoughts and calls and texts and notes.....They've meant alot!

Cleared for Takeoff

Lynn spent lots of time up and down the hill visiting clinics, doctors, labs and friends yesterday.

Lots of double takes and chuckles - since his demeanor was a bit strange (as you can see above). He'd found this headband at the Portland Saturday Market and wore it all day for Halloween - explaining in various ways how doctors had messed with his mind. He brightened up (frightened up?) people in elevators and waiting rooms all over OSHU, and now graces many other cell phones throughout Portland.

His docs were nonplussed and cleared him for his surgeries, noting how well all his blood counts and bun counts and PET scans were, and explaining how the surgeries will go. Starting Tuesday Nov 5 with heart surgery through the front, and then going back in (through a side route this time) on Nov 12th, the following Tuesday,  to take out the lung tumor, which has shrunk to 1/3 its initial size.  Seems like we're in good hands- and the doctors and their entourages have been extremely patient with us (especially me) in explaining procedures, anatomy, and recovery.


We're into distraction this weekend, before we begin the journeys. Here's Jono with his Halloween costume  (a one-eyed green monster - found in China) who entertained us last night.

Dave and Diana Phillips are here for the weekend to add to the fun distractions..And Betsy and Mel Aden will show up Sunday to keep the social whirlwind going.

So here we go,.. Next stop, hospital time!

A brief update to documentt my biking progress...

Mount Tabor (632 ft elev.) is no longer out of my biking reach so long as I stop 5 times on the way up to catch my breath and drink some water!!!

The OHSU medical campus is up the distant hill on the far left (as you face the foto)

So even if the sky's not the limit, old volcanoes are still in reach for me. 

The weather hit 70 degrees yesterday afternoon and should be clear through the weekend so Deborah and I are heading to a friend's house at the coast Friday.

Oceanside, Oregon

 
Living the Vida Loca - in Portland,

lynn

It is sunny and gorgeous here in Portland...

where I have been riding my bicycle up to 5 miles a day this week for the first time in over 3 months including some gradual hill climbing...










BUT I discovered today as I rode with Deborah that does not include climbing nearby Mount Tabor, an extinct volcano, 624 feet above sea level, where they hold the adult soap box derby races every year.

Not only is my energy good (except for waking up every hour and needing a nap most days) but the chemo treatments somehow failed to take my hair to the amazement of my doctor.  Although I voluntarily shaved my beard, I kept the mustache and the top of my head unchanged.

Also, the reduction in the tumor gave me back much of my breathing and mostly eliminated the cough that kept me awake at night.  So all those good wishes from you and good drugs from OHSU have combined very nicely so far.

Now my job is to remember that my immunities are low, my kidneys need lots of hydration and don't overdo it to get ready for my surgeries in early November.

Thanks again for all your email, calls, cards, good wishes and good thoughts during this time.

From back on the bike in Portland,

Lynn Sanders

Intermezzo

So, we are definitely writing this journey as we live it (and this is Deborah writing)…..Right now we’re in between treatment routines. Lynn finished up with chemo and radiation October 8th, and has some time off before he begins his round of surgeries November 5^th.  What to do with this interlude?  It’s not just a chance to get back into gear with biking, hiking, and life as we knew it pre-cancer. Partly that’s because the effects of radiation and chemo actually play out during this time away from drips and zaps. Lynn alternates tired and energized,  ready to roll and ready to nap….

We’re scheduling a few excursions that allow for both variations – off to Oceanside to stay at a friend’s beach house, stocking up on good books, and continuing to enjoy visits and walks.

Great weather for walks in Portland right now – the colors are turning, and the flowers are still peeking out amongst piles of leaves.  Mount Hood is getting snow - time for me to make ski plans  maybe with Jono and Aden...and other NW family downhillers.

We’re taking advantage of all the fun stuff around our neighborhood – and we can attest that Halloween season on Hawthorne is a definite song-and-dance routine!

Lynn’s purchased his Halloween costume – at least part of it. He’s going as a surgical patient – the pre-zombie version! (No, I do not plan to don the nurse costume - just not my style :))

Lynn’s sister was in town this weekend, while Jono was off in China and I was attending a class based on the work of the Stress Reduction Clinic at the University of Massachusetts Medical Center. Jon Kabat-Zinn created some very helpful exercises and “attitudes” to manage stress, pain and illness, so I thought I’d learn some of this.  His introductory book about his approach quotes from the movie of Zorba the Greek. 

Young companion: Zorba have you ever been married?

Zorba: Of course I have been married. Wife, house, kids, everything….the full catastrophe!

Says Kabat-Zinn, “Zorba’s response embodies a supreme appreciation for the richness of life and the inevitability of all its dilemmas, sorrows, tragedies and ironies. His way is to 'dance' in the gale of the full catastrophe, to celebrate life, to laugh with it and at himself, even in the face of personal failure and defeat. In doing is he is never weighed down for long, never ultimately defeated either by the world or by his own considerable folly.” 

The Kabat-Zinn materials reminded me of the value of staying focused on the present, despite the pull of the past and the future. It also made me go back to the origins of the word “catastrophe” – which turns out to have been used as early as the 1530’s to mean a” reversal of what is expected.” In the 1750’s the term started being associated with “sudden disaster”. 

Definitely lung cancer creates a reversal of what was expected – unfolding a rich life of good health, good friends, great explorations  - but  “the full catastrophe” is the reality of our existence, so why not dance?

Radiated past Three Mile Island levels and...

Counting down the chemo days

My chemo doc is amazed that I still have so much hair and no major side effects except not sleeping so well! I tell him that I am taking simple steps to try to avoid the side effects of my chemo:
1.  chew ice cubes throughout treatments to protect my tongue which has fast growing cells;
2.  rinse my mouth with warm water, salt and baking soda several times a day (same reason);
3.  take a dropperful of medical marijuana extract every morning (doesn't make me high) because some literature says this shrinks tumors;
4.  eat a Flintstones vitamin daily for iron;
5. have numerous small meals a day to keep up my weight (now at 240 lbs up from 226 lbs);
6.  walk less on heavy chemo days to avoid heart stress but otherwise walk all around (no biking right now) on good days.

Obviously everyone's situation is different, and I am lucky.  The tumor is about 1/3 its former size.  My breathing is much better.  The cough remains at night but I have better drugs with codeine for it finally and slept seven hours last night, albeit snoring to wake the dead!                                                                                                   

Heart surgery is now set November 5 to be followed  2 weeks  later with lung surgery, all subject to my recovering quickly from this current round of chemo and radiation which finally ends next Tuesday, October 8. So my November dance card  is looking quite full! 

My children, a sister and nephew, some Austin friends and Bay Area cousins are each coming in to visit me before the surgeries which will distract me from thinking about hospitals and medical issues I still only partly understand.

I am so appreciative for all the creative ways you have sent me pixie dust.  The pixie dust silo in the back yard is almost full yet more is on the way.  Keep the comments and emails and visits and calls and cards coming my way.

It all seems to be working well for me so far.

Upbeat and optimistic in Portland,

lynn sanders

Games of Chance and Pixie Dust

 

"Alea jacta est" (the die is cast)
     - Julius Caesar, as his troops crossed the Rubicon River towards Rome

 The heart surgeon met with us today, made a brief cell phone call to the lung surgeon, stepped back into the room and announced that he would be operating first.  So much for doctors "arm wrestling" over who gets my body first as I previously forecast.

Chemo and radiation end October 8.  Then heart surgery sometime after my body recovers sufficiently.  Before Thanksgiving?

Sew me up; I'm getting cold!

And that leaves lung surgery to be scheduled after the  heart surgery.  Ay, my head is spinning.

Finally I am getting some specifics on what has been a very uncertain medical situation until today.

Good news!  The radiologist says the tumor is down to 1/2 its original size.  I am breathing and walking better and generally have lots more energy including weeding out the nasty blackberry weeds and thorns in the back yard this morning.





So keep up the good thoughts as the roller coaster continues and my battle with the back yard weeds and bamboo, and with my cancer cells continues:

and sprinkle a little pixie dust  my way if you have any to spare.

From Portland  -  Lynn

The upsides of energy

Lynn is in between chemo treatments 1 and 2 -  enjoying a 2-week hiatus from managing IV'S, snacking on ice chips, and watching the scenery on the waterfront as the hospital complex adds more new buildings to the campus. Lynn's energy is back - actually it's back big time. Since early summer Lynn's been going slower and slower-  his big walks sometimes were barely past the bottom of the driveway at our house. This week however he's more like himself - and part of it is less chemo, but part of it seems to be better lung capacity. It's fun to have Lynn back with good energy and his consistent positive outlook about this battle.

Since chemo ended, we're taking longer and longer walks, and Lynn's volunteering to do things like get the car after a good downtown dinner (which meant walking about 5 blocks while our friend Lea Barrow (pictured here)  and I dawdled over the check at the restaurant). Lea's visit has given us reason for visiting the Japanese and Chinese gardens (and walking on a big field to settle into watching the chimney swifts do their dance in North Portland ). We're planning a trip to Timberline Lodge today....before the rains begin in earnest in our fair city. All activities with walking requirements that would have been impossible during chemo weeks.



So this good news and good energy inspired me to muse on the concept of energy. Turns out I don't quite know how energy works in humans - much less in the world at large.

 According to wikipedia "In physics, energy is a conserved extensive property of a physical system, which cannot be observed directly but can be calculated from its state. Energy is of central importance in physics. It is impossible to give a comprehensive definition of energy because of the many forms it may take, but the most common definition is that it is the capacity of a system to perform work."

What I do know is that energy can be depleted by odd things - long hikes, big meals, long day at work, bad news, the vision of a kitchen sink piled with dirty dishes.....and can be replenished by equally random items - chocolate, visits from friends, a joke, 10 minutes of yoga, a text message, a good night's sleep, a lovely downhill coast, lots of water, a smile. Major goal through this treatment is finding all the little things that add energy.

We have a week of energy ahead before we return to the chemo. Gonna be full of good times!

The first set of chemo treatments ended today but nothing remains simple...

One down and one more chemo set to go as radiation continues daily.   Meanwhile I am rereading the materials and learning  how many side effects may manifest 4-5 weeks after treatment starts.


Dinner with thoughtful friends got me thinking about tai chi,  meditation and even the spiritual basis for hope and self healing.  These are unexpected avenues for this Western mind to be exploring.   But difficult times may call for expanded options.




Now another twist. Imagine you take your old car into the shop after the odometer rolls past 100,00 miles just to anticipate what repairs it likely will soon need.

You are then stunned to receive an estimate  of $10,000 for a new engine, transmission and a rear axle all needed in the next few months.  Well, lo and behold, I not only need to beat lung cancer but I also am facing heart bypass surgery!

So my excellent doctor explained to me that after the next set of chemo treatments, my heart and lung surgeons will  arm wrestle  over who  cuts on me first.

I biked over 2,000 miles this year and came into all this as a healthy and unlikely surgery patient according to each doctor who met me.  I am optimistic!

So keep those good thoughts, comments and emails coming. Feel free to call.  Any time is fine. Or come visit.  Dana and Meghan are driving in tomorrow. Jono returns from a China business trip too.  Longtime friend Lea will be here next week. 

The roller coaster continues.
I'm riding with my eyes open and hands up and trying to enjoy it all. Whoopee!

Back in Gear

After a short detour and a brief course in cardiology, Lynn's been pronounced ready to resume chemo and radiation Tuesday (only one day detour!). So we're now planning for the gradual onslaught of  "chemobrain". Turns out there are hats, t-shirts, name tags, posters

and bona fide research, as well as  various other accessories to remind the world that people undergoing chemo are likely to be slightly off their game - losing words, forgetting what you were about to say or do, and otherwise being in a fog.

Sounds like most of us under stress.

But  there you have it. Much more satisfying to catch Lynn in chemobrain than to focus on some of the other aspects of cancer treatment.

Thanks to Jono and his roommates for taking on some of the extra driving this week!

Precautionary tales

Hmmm...Chemo and radiation are all well and good, and the precautions we were told to take did their work well -  ice chips, acupuncture, imagery, protein smoothies (with kale - Portland's favorite food group), short walks, flintstone vitamins with iron (yes, there still is a Barnie character in those chewable tablets). Thanks to friends who sent books and love and advice...The set up for beating cancer is full of kitchens well stocked with healthy foods,  book shelves  crowded with humor books nd trashy magazines, and machines of every ilk with classy plug-ins, beeping noises, rolling desks etc. Lynn navigated the first week reasonably well - even attending his bicycle club meeting and stirring up club business.  However a nagging chest pain that started on day 2 worried the docs. So tonight (Friday ) Lynn was admitted to the OHSU hospital (up the hill) for observation to make sure that nothing is awry. A precaution, but a wise decision. I got to meet the doctors who have been responsible for Lynn's pacemaker (they weighed in on next steps, and just came by to say hi because they like Lynn), and to find out first hand what shift changes look like "on the hill" - swarms of people in blue baggy pants descend on the tram, ready for the ride down to the waterfront to frolick somewhere else in Portland.

Day One is behind us.  It was a kaleidoscope of medical procedures, important information about new meds, diet whats and what nots and possible future side effects with appropriate graduated responses.  It was also much welcomed visits at the Infusion room from Deborah (with snacks) and Jono (with lunch).

In our Up and Down theme, I started up on the hospital campus hill overlooking the town and the Williamette River, then took the tram DOWN to the OHSU Center for Healing building for chemo and, in the afternoon, with a free Patient tram pass traveled UP to radiation.

Medical terms I don't even understand are creeping into my vocabulary.  Pills that fight nausea which I do not have also help with sleeplessness.  No more airline "chuck buckets"; its "emepails".  See what I mean! 

But this does not distract from my main themes.  First, this is curable so why not me.  Second, if poisons are needed to kill certain cancers, I wholeheartedly accept my treatment plan and trust my doctors.   Third,  my primary jobs are to keep my weight up  (I fortunately have been practicing for this one much of my life) and to avoid the onset of anemia and fatigue with walks, foods with iron, Flintstone Complete daily vitamins, and short but flat bike rides.  Surrounded by all my loving friends and family, I think the odds are good and improving. 

So hang on for the ride up and down the Hill!  This morning is acupuncture Up the Hill (preventative treatments - years of Chinese wisdom on my side), then radiation.  Then Down the Hill by car for lunch with Jono at the Chinese Gardens downtown and back across town for chemo.  Got my book tape, snacks, cough syrup and water bottle and ready to go get after it.  Yee ha!

Getting Ready

After consultations, tests, and trips to the OHSU medical oncology clinic (at the waterfront)  and the up the hill  to radiation oncology, the doctors have confirmed a treatment plan and timeline. They will use chemotherapy and radiation to shrink the tumor in the lung, and then do surgery to remove what's left, followed by a second round of chemotherapy. Lynn got a big notebook of what to expect during chemo, and we'll both attend a workshop next week on more details, to make sure we are doing the best we can on managing all the side effects of treatment. Lynn was not surprised to hear that he'd lose his hair, but (surprisingly) taken aback when he heard he'd lose his beard. Hasn't been clean shaven in years!   All this is scheduled to start the day after Labor Day, so in the meantime we're getting ready. We went to the Portland Art Museum Rental Gallery and selected a landscape  - Vicki Mintkeski's Beach Trees - for our downstairs  den-cum-guest bedroom. This will likely be where Lynn hangs out after treatments, if he's too tired to climb the steep steps to our third floor bedroom. However the docs say stair climbing is good for him, so we'll see.

Beach Trees will hang in our home for about three months - providing something fun and imaginative to appreciate while daydreaming....and killing cancer cells.

What it's all about

Hi readers -

We're using this blog as a way to update friends and family about Lynn's sojourn fighting lung cancer, with a lot of help from the Oregon Health Sciences University (OHSU) team. "Up and Down the Hill" references OHSU - which has offices and facilities on the waterfront in Portland, as well as up the hill overlooking the Willamette River. There's a fancy tram that connects these two campuses, and we're going back and forth a lot as we get information about how best to treat this disease.

Here's a view of the tram....

We'll be periodically posting updates here. Feel free to leave comments.

Thanks for your support!

Deborah and Lynn