Wednesday, July 6, 2011

Eight Days Post-Op July 6, 2011

Hello everyone,

I know I need to finish my description of the surgery and post-op fun, but am finding it hard to do so. Some kind of mental block wants to not think about it right now. Am going with my feelings to avoid. I'll get back to it...

I'm doing pretty well, I think. Walking several times a day. Resting. Much TV. Bored but with no energy is what TV's for...can't read for long, can't knit and not make hideous mistakes. Can sit for one to four hours 'til butt gives out. Then get to lie down on back or left side - not on right, of course - my favorite,

Have appointment with doctor tomorrow. Hope to start home afterwards.

Enjoy this gorgeous California summer day! Love to you all!

Sunday, July 3, 2011

5 Days Post-Op...Unbelievable! July 3, 2011

Hello Dear Family and Friends,

Hard to believe, but I've had a partial hip replacement done on the right side. Hard to believe just how painful it has been. Debra, Melody and every hip patient I've ever taken care of...I had no idea. Yesterday, in a room across the hall from me, a really old lady (I've been called "young" with this diagnosis!) cried out when the PTs and nurses helped her stand up on her first day post-op. It's hard not to at least moan out loud.

It's been a fast slow journey:

June 16 - fell in Golfe Juan, France. Made my way 100 yards to friend's apartment to rest and have dinner.
June 17 - June 19 - walked around Antibes, Valbonne, the Cap, Cannes (with car support) to continue vacation and get leg to improve.
June 20 - to French public hospital (a whole story about the hospital and how different than US). Xray shows "pelvic" fracture. We decide to come home.
June 21 - 22: awaiting flights home. Mostly bed rest and wheelchair. Mourned loss of Belgium, and rest of England trip.
June 23: business class flight to London; overnight at Sofitel Hotel at Heathrow.
June 23 - 24: flight to San Francisco. 10 hours, business class with lay-down pods. Most excellent!
June 25: appointment with Dr. Krueger, orthopedic surgeon. He says hip, not pelvis, is broken! Spent the day in radiology at Penninsula Hospital: CT scans, x-rays, bone scan. Surgery set for Tuesday, June 28. No slots before then.
June 26: doc appointments - almost lost in the hip mess is the fact that I am still cancer free! Hard to celebrate right now, but I'm sure it will dawn on me soon. It is great news! Saw oncologist, as well as a primary care doc for pre-op clearance. Also pre-op visits for lab work, EKG and anesthesia. Finished with all this at 5:00 pm. A long day.
June 28: to Penninsula at 12:30 pm for 2:00 surgery. When the time came and went, knew another surgery had gone long. Dr. Krueger visited to say that the films showed that the hip had been moving and that there was reduced blood flow to ball of joint, possibly indicating that the pinning that had been planned would eventually fail and lead to a partial or full hip replacement. He recommended a partial hip replacement now. OK...

Anesthesiologist, Dr. Shaughnrssay, wants to do a spinal anesthesia! No surprise to you, maybe, but I hadn't even considered it. Spinals were on my "no thank you" list of medical procedures. However, with persuasive arguments - like no pain for up to six hours post-op, we agreed.

These days, almost all procedures start with patients in a pre-op holding area. Your operating room awaits, where you meet your scrub nurse, circulating nurse and get to see the instruments laid out for your operation (there are usually hundreds, big and little), the lights, the anesthesia equipment, the huge LCD panels to display vital signs, the x-ray can be overwhelming. And, all this with no sedation!

I think I'll pause in this blow-by-blow to get cleaned up for the day. A home health nurse I'd visiting in the hotel room in about an hour. Must be ready.

Saturday, June 25, 2011

A Vacation Gone Awry - June 26, 2011

Hello dear family and friends,

It's Saturday on one of two days that Jim and I were to be watching Wimbledon live in England. Instead I'm sitting in a hotel room in Burlingame near SFO watching tennis on TV. It's not because it's really better on's because I broke my hip on June 16 while strolling home from grocery shopping in Golfe Juan, France (on the Cote d' Azur/French Riveria). On our first day, I fell after tripping on a 3" curb...and the end result is this current mess! Totally not fair!!!

You all know that getting back on my feet after 3 surgeries, chemotherapy and radiation throughout most of last year has been hard. Very slowly, my strength has returned and I've been able to work about half time, walk, take care of my self and do a few things around the house. This trip was to have been 27 days, mostly in England, with brief stops in the south of France and a couple of days In Bruges, Belgium. We made our plane reservations in January, for pity sake!

Typical of the know-it-all nurse that I am, I was convinced that my injuries were simple bruises. A small cut on my head quickly resolved into a big egg, tender only to the touch.
My right arm hurt quite a bit for the first couple of days and bruised rather dramatically, but had good range of motion and improved pretty quickly.

My right hip/butt/groin area, however, was painful with some bruising and difficulty with weight bearing. I had good movement - could lift and flex/extend at the knee, my foot was OK, no real quad pain...just that nagging achy, burning pain at the top of my hip in the front.

My decision was to see how it went over a couple of days...after all, a bruise would begin to resolve and improve, right? Our friends,Paddy and Annemarie, were able to find a car to haul us around and we saw beautiful Antibes and its great outdoor market, ate lunch in the village square and watched people. I walked to and from the car drop-off points and by the end of the day was pretty wiped out with pain and a tired body.

The next two days continued much the same - cafe (tea for me - still can't stand the idea of coffee!) and croissants near the beach, village travels, Cannes from the car, and more. If you haven't been to the south of France, you won't believe how gorgeous it is...truly a feast for the eyes, ears, nose and taste buds. And, the wealth concentrated there is just mind boggling! Super yachts built for more than $1 million per foot! Reality is very different for those folks, truly.

After three days in which my leg did not improve, I decided (with Jim's "you will go" support) to go to see a doc. Knowing nothing about the French medical system, we relied on advice from our friends and their friends. We went to the local hospital emergency department in Antibes - guess what? Some things don't change world-wide: it took about three hours from registration to decisions. The doctor, who I had been assured spoke English, told me my "pelvis" was broken and that I would need surgery "not today, but maybe one or two days.". My response, and Jim's, was "send us home."

The doctor tried to impress us with the danger of going home to the US...deep vein thrombosis, continued pain, other issues. We said "we're going home." The doctor wrote prescriptions for pain and anti-inflammatory meds, crutches, and started me on anti-coagulants injections. "You will need a nurse to give the injections," he said. "I am a nurse," I said.

After signing out against medical advice, we headed back to our flat to make flight arrangements and to figure out who, really, would give me the shots. We called my oncologist, made sure the meds were OK, got travel arranged and felt pretty ready to head home.

Those of you who know me know that since 11 years of age, I have been terrified of needles coming my way. I can give shots, draw blood, start IVs, etc. on other people...just don't come at me with the same. How ever, there's nothing like months of medical care to get you over all that squeamishness! While not quite ready to give myself shots, I would have figured a way to do it...if my so excellent and wonderful Jim wasn't by my side. He's turned into a great shot giver - abdominal site and all. I truly don't know what I'd do without him!

So...we're home - rather, we're in the Bay area. We saw an orthopedic surgeon yesterday, who told us that my pelvis wasn't broken! Hooray!! Jim and I put our hands in the air and high-fived. "Unfortunately," he said, "it's worse. You've fractured your hip." And, he showed us on the films we brought back from France. DISAPPOINTED!!!

The rest of yesterday was spent getting tests - CT scans of chest and abdomen (for cancer surveillance, due now anyhow), and pelvis, along with repeat x-rays of the pelvis and a full bone scan (again both fracture and cancer surveillance). After we'd left the hospital here, we got called back for an x-ray of my right elbow which lit up like a Christmas tree on the bone scan. We'll learn what that's about come Monday, I suspect.

Surgery happens on Tuesday afternoon. Til then, I am not allowed to bear weight on my right leg. The doc was incredibly surprised that I could tolerate waling those first few days - and in retrospect, so am I. Who knew? It didn't cross my mind that I'd broken my hip.
The surgery itself will be a pining, rather than a hip replacement. We're hoping that the blood supply to the "ball" portion of my femur is not disrupted...and that it will heal without necrosis (dying of the bone). If it does, I end up with my own bone healed and good to go in something like six to eight weeks (the best outcome). If not, I will need more surgery and a full or partial hip replacement. What do you think? Given what happened last year, should we take bets about how my luck will hold for this challenge? We have our fingers crossed for the best outcome, of course.

After surgery, there will be a follow-up doc appointment at one week post-op. Our plans are to stay here in the Bay area through July 6, hoping that we can go home after that.

That's the sad tale of our long awaited vacation to Europe. We didn't enjoy it as much as we thought we would, needless to say. Are there lessons? Watch your feet when walking on cobbled, uneven roads, especially if you have a "falling" history like me. Have a couple of glasses of wine before you might bounce better. Enjoy every single day to the max - the next one might not be as fabulous!

A note: writing my blog on my iPad doesn't lend itself so much to editing. The screen doesn't scroll properly. I've tried to fix the boo-boos. Please forgive those I've missed.

Much love to all of you! More soon...honest! :)

Monday, March 7, 2011

Where Have I Been? Second Edition March 7, 2011

Hello dear family and friends,

Although I didn't intend to stop writing to let you know how things are going, it's actually somewhat of a good sign that it's been so busy that I haven't had time to sit down to do this.  I just finished reading the blog of a friend of a friend who has lung cancer and the light went on...I should write to you all!  My apologies for the giant gap in communication.

So here I am, actually feeling quite well.  Hooray!  About mid-January, I stopped needing a nap most every day.  Better yet, near the end of February I got a clear mammogram and ultrasound (I call them 1/2 mammo and 1/2 ultrasound, since there is only one side now.  Not half price, however).  Also had lab work done and am no longer anemic - yeah!  That's where the energy is coming from.  My radiation oncologist says my skin is fine.  And, I finally got this lousy cough diagnosed (recurrence of asthma, coughing since October) and am on meds to treat.  It's much better!

That's the health stuff - every thing's looking good and I'm feeling better.  Here's what's still recovering from the slash, poison, burn regime of 2010: easily tiring, low appetite and strange tastebuds (have now lost 30+ pounds and have about 10 to go), fingernails that are still recovering from chemo (ugly) and peripheral neuropathy mainly in feet and right fingers.  I'm told the neuropathy may or may not go away (it's from chemo, too), but my left fingers are much better so I have hope that all will gradually recede.

BTW:  I have hair on my head (and most other places which I could have done without).  I didn't get either of my two wishes:  I wanted color any color, but it's white again/still.  I wanted curls and so far it's a combination of straight and wavy.  It's only 3/4 of an inch long, so maybe other changes will come...the bottomline is whatever color or texture, I'm glad to have hair again.

Jim and I took a few days in late January to go to Hawaii.  We really took it easy - mostly because of my energy level - and did virtually nothing but laze around.  I discovered that a mai tai every day was delicious and by the end of a few days I was able to finish a whole Jim's dismay!  The sun was  good, good, good - we were so in need of warm, lazy days.  It was perfect. 

Since Hawaii, we've had two one-day retreats at the Requa Inn in Klamath.  It's about 25 minutes from home and we've loved the super comfortable river view rooms and most excellent food prepared for the winemakers' dinners.  We highly recommend this wonderful Inn - even if you live nearby as we do.  It is very casual, peaceful and run by our wonderful friends who take great care of every guest.

We have our minds on travel, as you can see.  We felt very deprived last year and are hoping for several small and larger trips this year.  At this time, we have another Requa Inn overnight planned and almost a month in England and surrounds planned for June.  Can't wait!

In between travel for medical check-ups and fun, Jim and I are working, dealing with the never-ending rain (actually a good thing), enjoying our house and thinking about yard work and gardens soon to come.  I feel so glad to be through treatments and grateful that healing is happening. 

A group of wonderful women gathered me in through this last year - they all walked the same path with breast cancer and  shared many war stories and laughs as they helped me along.  Now, there is a new member of our group (the club no one ever asked to be a member of) starting her journey...and we are beginning the process of holding and supporting her along the way.   I want to do for her what the others did for me - among other things, each woman has reminded me that getting through the treatments is possible and that surviving/thriving happens. 

An amazing thing - When you are diagnosed with breast cancer, suddenly women that I've known (or not) came forward to say "I had breast cancer too."  Twenty years ago, eleven years ago, five years ago, last year.  I never knew there were so many of us quietly going about life.  There is a sisterhood out there and they came forward quietly to say "how can I help?"  Believe me, just knowing you are there helps!  And, so many people gave the same love, information and support to Jim, too.  It was all really important.

I hope you too are looking forward to Spring as we are.  I hope you are well, that your families and friends are well.  And, I hope you get your sunny, warm, lazy days in whatever fashion you prefer them.

I will try not to be so long between posts.  I do love hearing from you all.

Friday, January 14, 2011

A Mixed Message January 11 and January 14, 2011

Here we are on the other side of 2010, digging in to the reality of this new year.  There are already things to celebrate - including one that will be perhaps a bit obscure to some of you, though it makes me smile.

Last year, before 2010 blew up for me, I had the privilege of working with two local park associations to help them work/think through the possibility of merging their organizations.  The associations had already begun the work - they had a small group of board members from each organization ready to meet to discuss the pros and cons of the effort and had agreed about the importance of really exploring this big change.  All they needed was a neutral party to help them organize the discussion, ask the hard questions and stay on track to reach a decision.  I was lucky enough to be that neutral party for their initial discussions.

On January 11 the Daily Triplicate - our local newspaper - printed a front page article about the culmination of those discussions.  Where there were two organizations doing much the same work, there is now one.  Where there were two boards of directors, there is now one.  Where there were two similar visions and missions, there is now one and it's focused on helping the local state and national parks in our magnificent corner of the world.

Although I was only able to work on this project for a few early months, I am crazy proud to have been a part of it.  These excellent, focused people have accomplished a small and wonderful thing that will, I truly believe, make a difference to these parks and the thousands of visitors that enjoy them every year.  And this small miracle was accomplished in a desperate state budget situation where many organizations are struggling to keep their piece of the "pie," instead of coming together in a common sense way to view the work differently.

The example of this merger is, for me, a shining juxtaposition to what happened in Tuscon over this past weekend.  It may seem like a big jump in brain work (which I have been known for) to go from a successful local organization merger to national sadness about the tragic deaths and injuries of so many people, but I believe they are related in fundamental ways.  In one case, a new, shiny and good thing emerged from lots of talk, compromise and relationship building.  In the other, people lost their lives because an isolated (and mentally ill?) person short-circuited opportunities for talk, compromise and relationship building.  While most of us will never - thank God - use a gun to express our opinions, there are still aspects of the Tuscon tragedy that reflect disturbing trends among us.

I don't understand how we've moved so far apart that many of us are unable to listen to others, that so many of us seem to have highly personally negative opinions of people who don't agree with us, that so many of us are absolutely positive in the 'rightness' of our beliefs and the 'wrongness' of others.  I know that we have always been a nation of folks with strongly held opinions.  I just wonder when we came to believe that 'we' are so perfectly right that respectful listening has turned into opportunities to gather cynical insight into how 'they' think.  I wonder when we became so polarized that there is no room for respectful discourse, for enlightened discussion, for compromise and caring.

I grew up in a world where strongly held opinions were frequently expressed at loud volumes - whether about the latest kid mistake (there were more than enough) or political events.  I learned to be very quiet and to listen - in fact, I learned not to participate and to actually hate the kind of heated, out of control debate that politics often engenders. In these settings, I have always felt most comfortable in the listen and don't participate mode, but I also have felt a little like something was wrong with me because I didn't want to dig in and express my own strongly held opinions.

I've always worked in systems to make change...calmly, in an organized manner, with thoughtful debate about potential outcomes and solutions.  Lots can be accomplished this way.  The parks association merger is a great example.  After what happened in Tuscon, I believe more and more that we must all find calm, open and appreciative places to listen, discuss, work together and change.  We have to move back from the brinkmanship and the terribly nasty word-slinging that has become today's trademark.  What do we gain with all the mud and negative verbal energy?  How does it help us come together to shape our lives, communities and nations?

At the Phoenix memorial for the dead and injured on Wednesday evening, President Obama spoke a moving tribute for us to consider.  Here are a couple of particularly key points he made:

"But at a time when our discourse has become so sharply polarized — at a time when we are far too eager to lay the blame for all that ails the world at the feet of those who happen to think differently than we do — it's important for us to pause for a moment and make sure that we're talking with each other in a way that heals, not in a way that wounds...

As we discuss these issues, let each of us do so with a good dose of humility. Rather than pointing fingers or assigning blame, let's use this occasion to expand our moral imaginations, to listen to each other more carefully, to sharpen our instincts for empathy and remind ourselves of all the ways that our hopes and dreams are bound together...

The loss of these wonderful people should make every one of us strive to be better. To be better in our private lives, to be better friends and neighbors and coworkers and parents. And if, as has been discussed in recent days, their death helps usher in more civility in our public discourse, let us remember it is not because a simple lack of civility caused this tragedy — it did not — but rather because only a more civil and honest public discourse can help us face up to the challenges of our nation in a way that would make them proud."

Those of you that know how much I hate politics and political debate - for the reasons above - also know that I have thought about this blog long and hard.  I hate to be preached at and I don't like preaching...but this seems like such an important full stop in our busy worlds, a place I've really needed to think about business as usual and what that means today.  I've decided that I need to re-resolve to listen, to try to hear, to try to understand others' points of view...even if I never fully agree.  I need to remember that we all have strongly held opinions and that sometimes hearing opens up areas for compromise.  I need to do my part to solve problems and not just create more divergence.  I hope you'll think about it, too.

We each have the opportunity to make our worlds a tiny bit better every day.  Lots of tiny bits make for big change over time.  I'm going to keep trying. 

"If we have no peace, it is because we have forgotten that we belong to each other." Mother Teresa

BTW:  on the cancer-free front, I'm getting better every day.  I realized yesterday that I actually spent each and every day this week with my head above parallel to the ground (I didn't have to nap).  I know it seems silly to feel like this is an accomplishment, but when you've had to stop and nap virtually every day for the past nine months, it's progress.  I do still sleep 10 - 11 hours most nights, however.  Radiation skin has almost gone...hooray!

I hope you are all well and enjoying these first few weeks of 2011.  I'm still convinced this is going to be a fine year!