Hospital Gown + Confidence = Oxymoron

Fifteen years in retail fashion taught me many things.  But the most important thing I learned is that when I feel like I look good, I honestly feel and "do" better.  To this day, if there is an important event - interview, meeting, presentation, date, etc., I will take the time to make sure I have the perfect outfit and all the correct accessories.  Then I only have to worry about what I'm going to say....not about how I look.  Why, you might ask, is this important to share with you???

In my opinion, going into the hospital, for any reason, is a time for making sure all of the confidence chips are stacked in your favor.  The night before my mastectomy, I laid out a cute, but comfortable outfit.  On surgery morning, I showered and got dressed.  Took time to do my hair.  No make-up, but made sure my face was clean and moisturized.  My friend picked me up promptly at 5:00AM with "wow, you look adorable!"  With my confidence boosted, I was ready for surgery!  

At 5:30AM, the pre-op nurses, put a quick and decisive end to my adorable-ness when they handed me a bluish-gray, standard-issue, one-size-fits-none, hospital gown w/unmatched robe, white compression stockings, gray slipper socks with white grippey stuff on the top AND the bottom and an over sized "hat" that most self respecting cafeteria workers would not be caught dead in!  In the span of 30 minutes, I went from confident patient, to just another patient to be operated on, and I was less than thrilled.  Now, before you start in, I can practically recite all the reasons for this change of garments, but does it really have to be that way?????

According to Rachel Zinney, the founder of Dear Johnnies, the answer is a resounding NO!  The tagline "the get better hospital gown", is true!  With a little pre-planning and some cash, I gave myself the gift of dignity and style, in a place where there is precious little of either!!  You can give yourself or someone you love, the gift of a hospital gown that is bright, stylish, improves the color in your cheeks, covers your assets AND meets the needs of your medical caregivers.  A win-win all around! 

It will probably take a little work to convince the nurses, that your hospital gown is not just any gown you brought from home to wear in the hospital - but I promise you, it is absolutely worth the effort!!  The minute I changed into my own gown, I started to feel more like Kathie and not "the patient in room 95W".  These gowns are the genuine article - open in the back as needed, but snap closed and tie in the back to protect your dignity as you walk around the floor, and have shoulder snaps to accommodate IV equipment or nursing.  Size matters....so these gowns come in a couple of sizes, including Plus for several styles.  Once my nurses were satisfied that they would not be inconvenienced, they were quick with the "oooohhhs" and "aaahhhhhs". Sprung from the hospital, I re-gifted my COCO gown to my friend Megan, an ALS patient who is in and out of the hospital....hopefully she will feel just as stylish!

Thank you Rachel for giving us confidence and dignity at a time when we feel especially vulnerable!

Props to Peter Shankman and HARO for sharing the Dear Johnnies link earlier this year!

Bringing Sanity to Mass Communication

Back in January, as I was beginning my journey with breast cancer, I quickly discovered that, one of the biggest challenges of getting sick, is that
my friends all wanted to know how I was doing, and more importantly....how they could help me. I found myself fielding lots phone calls at all times of the day and night, and I felt like I was always repeating myself...."haven't we already talked about this?"  I didn't know who I'd spoken to, couldn't remember what I'd said or who I'd spoken to, and frankly, it was tiring for me.  But I clearly understood the love and concern of my friends, and their need to know what was going on, so that I didn't feel alone.  

In frustration one day, as I chatted with my friend Patti, I remember saying that "I just needed an easy way to communicate with my friends and family, you know, post it once and let them log in to see what was going on."  I've been around technology long enough that I was sure there was a solution, I just didn't know about it.  Her answer,"why don't you just set up a CaringBridge site?"  My startled response, "I've never heard of CaringBridge."  Turns out this is the best kept secret on the internet!! 

It was easy to get started.  You can do this as a patient, or someone on your caregiving team can work the magic!  Once the basics were in place I could start typing my thoughts into the journal section.  I can share thoughts, test results, updates and more, once.  Then friends and family can log into the site with a web browser and get the exact same information, when it's convenient for them.  Did I mention that the best part is I only have to post it once!?  My CaringBridge journal has significantly cut down on the number of phone calls, which allowed me to get the rest I needed and heal.

I still get lots of calls, but now it's to offer good wishes, fill in some of the details on what I posted and catch up on their lives...it's the best!  Since I started using Dragon Naturally Speaking, I just speak my thoughts into their journal site and it's even quicker!  The guestbook section allows anyone to leave encouraging messages, which has proved invaluable over the past few months, helping to keep my attitude positive and strong.

CaringBridge is easy to setup, easy to maintain and more importantly it easy to share the login credentials.  This was a huge help when I was in the hospital, when everyone was the most worried!   No one had the burden of answering a million phone calls to find out how I was doing!

The most time consuming part of getting started was collecting all of the e-mail addresses of friends and family and sending the URL once I had the site set up.   This part requires a bit of advance work, but it's worth the extra effort.  To the Dev team at CaringBridge, if you're listening...it would be awesome if there was a built-in tool to import an address book!! 

I use Outlook.  I used the export feature and created a master list of friends and their phone #/e-mail addresses.  From there, I created about 10 logical categories, based on a common thread (e.g. church, relatives, colleagues, belly dance, etc) and asked one friend in each group to be the point person.  I gave each point person a list of close friends associated to that group and then gave the master list to my friend Cindy.  Several friends sent out an advance notice, pointing their list members to the site early!

The best part of all this, in my opinion, happened on surgery day.  Cindy made about 15 calls and one posting to the site to start the communication tree; notifying about 450 of my friends and family members, scattered across the world, that I had made it through surgery with flying colors. It was awesome!

To get started, go to www.caringbridge.org.  Have fun, pass the word about this cool resource, and let me know how it's going!

School was NEVER this much fun!

I'm a student again!!!  I've returned to a learning mode, working to learn the craft of blogging.  In the past few weeks, I've read a number of blogs and have stumbled onto some great practical resources. One of them is pro-blogger.net. On July 15th, Darren Rouse, the author of pro-blogger.net posted a challenge to his readers to take part in the 7 Link challenge.  The idea is to publish a post a list of seven links to posts that you and others have written that respond to the seven questions listed below. This sounded like a lot of fun.  

So, while it's a little after the fact, here is my entry for Darren's challenge:

• Your first post: Shift F10
  
• A post you enjoyed writing the most: Aftermarket add-ons for your wheelchair
• A post which had a great discussion: 100 things...leading to a single choice 
• A post on someone else's blog that you wish you'd written:  How to pissed off the fatally ill written by the fabulous Carla Zilbersmith, who lost her battle with ALS earlier this year. 
• Your most helpful post: Project Gift Box - Organizing Yourself
• A post with the title that you are especially proud of: Hey Papa....I'm doin' OK! 
• A post that you wish more people had read: I had a tie here! Kids and ALS and Why Does Fundraising for ALS Matter...Really?

This was a fun challenge to complete! I urge you to check out some of the posts, then head over to Darren's site to check out other entries.   If you are a fellow blogger, consider sharing your entry with me and I'll check out as many as I can.  If you enjoyed this post, please leave a comment or become a subscriber. 

Thanks for reading!

Off the Bench…Back in the Lineup Again!

I am a huge baseball fan! And…even though they regularly break my heart, I remain true (29 years and counting) to the orange and black jerseys worn by the San Francisco Giants. My brother, an equally devoted Oakland A’s fan, and a few other friends have offered to pay for therapy! Hopefully, this bit of insight into my psyche sets a context for this post.

I’ve missed writing. I’ve been on the bench for 6 months after taking an “I found a lump” curve ball to my left breast on January 21st. Four little words that have significantly changed my strategy to playing this game called life. Turns out, I was lucky to get a “brush back” which allowed me to assess my life and make some changes, so that I have the stamina to stay in the game.  Here are just a few of the life lessons I’ve learned from baseball and my time on the bench:

• In January, when it’s still gray and icky, my heart leaps hopefully when I can start counting the days to spring training, along with all of the sports pundits. Hope springs eternal in January – it’s a new season and this could be the year we go all the way!  Every 365 days, I get to be hopeful - to start over to reach my personal dreams.
• There’s a lot of strategy to baseball. Pitching rotations and match-ups; hitting lineups; officiating; home or away; number of days on the road, and so much more. Same as life. Lots of things to consider when making changes, but it helps to know my team, how rested I am, am I on my home turf or on the road, what/who can I always count on?
• It’s a team game that takes 9 players, plus a cast of back-ups. And…any one player can be the hero or the (scape)goat for any given game. I’m only as good as the people I surround myself with.
• One game does not a season make. One has to shrug off a bad break or performance and mentally get into the next game fast. There’s never a lot of time for boo hoo-ing or second guesses. Equally important, a good performance today, does not guarantee a good performance tomorrow!
• Each player is a specialist, but there are times when opportunity knocks and one needs to abandon specialty to get the job done.
• 168 games makes for a long season, so players must have endurance and be resilient to make it through a full season. Health, training/preparation, attitude, support and flexibility, all play into one’s ability to make it through a long season.
• The game is on the field! Fans and coaching makes a difference, but in the end, the coach and fans are not on the field, the players are. If it is to be….it’s up to me!
• For a variety of reasons, players can spend a lot of time on the bench and not on the field. No one wants to be on the bench any longer than they have to! Time off is good. Too much time off is not good – at least for me!
• From a purely biased perspective, San Francisco has the cutest little ballpark in the league, and where else but a ballpark, can you enjoy beer, friends, and the smart crack of a line drive? It’s good to remember to stop and smell the roasted peanuts!

Six months has brought many changes and insights which are great topics for a blog about meaningful giving. For now, I am ready to play ball, so I’ll see you on the field - or in this case - on this blog!!!  For all the baseball fans, what are your favorite ballpark memories? What life lessons has baseball taught you? Please comment and share your stories!!

If you are interested, my CaringBridge online journal chronicles much of my personal journey with my breast cancer diagnosis.

Photo by Backpacker.

Rock on Carla Z!

If you've not discovered and/or taken the time to read the blog Carla Muses, you are seriously missing out.  Just my opinion.  Carla Zilbersmith is sassy, smart, and wicked funny.  Oh...and she just happens to have ALS.  I didn't know her bALS (before ALS) - my loss I assure you - but I suspect the disease has only served to sharpen an already razor-sharp perspective on everything...from the world, politics, dating, self care and quite literally, EVERYTHING in between.  She is a gifted writer, gamely sharing her ALS journey in full, out loud, living & breathing, color.  Late to the game, but yes....I am a fan!!

With that in mind, you should not be surprised to hear that she's written an informative and (it wouldn't be Carla's if it wasn't!) irreverant guide to living (with a capital "L") with ALS instead of waiting around to die from it.  While the Vain Girl's Guide to Living with ALS is clearly targeted to women living with the disease, never fear.  With and open heart and an open mind, there is something for everyone.  There are quite a few take-aways for me!!!

Once your laugh muscles are warmed up, the next step is to check out the film "Leave Them Laughing - a Musical Comedy about Dying".  Treat yourself to a full, "Carlaful" experience.

Enjoy!!

ALS claims tireless California ALS Advocate Steve Hall

I met Steve Hall twice during my tenure as the Advocacy and Public Policy Chair for the ALS Association - Greater Bay Area Chapter.  After his retirement from the ACWA in 2007, as the effects of ALS made it difficult to work, Steve became an advocate for legislation on ALS at the state Capitol. His motto became, "As much as I can for as long as I can." Steve held the ear of many influential legislators in Sacramento, testified on behalf of ALS Patients for legislation carried to the State Senate and Assembly, and helped to open important doors for the CA ALS Advocacy team.  He was every bit as gracious and courageous as Bob describes.  

On Thursday, January 28th, a floor session is scheduled in the California Senate.  Senate President pro Tem Darrell Steinberg will speak about Steve’s life, his battle with ALS, and adjourn the California Senate in his memory.  

I too, am saddened that another champion has been lost to ALS and send his family my fondest prayers and wishes as they grieve Steve's passing.  Each of us can hope that our lives are remembered in such a warm and clearly enthusiastic manner!

Greetings:

It is with a heavy heart, that I share with you news I received this evening that Steve Hall passed away this afternoon due to the ravages of ALS (Lou Gehrig's Disease).

Steve was a blessing to me far more than anyone can ever know. He was a competent, loyal and caring boss for nearly 10 years during my tenure at ACWA. He was a wonderful mentor. He was a great friend. He was a brother in Christ. It is the faith I share with Steve upon which I rely upon tonight, comforted in the knowledge that Steve has escaped from his broken earthly body and entered into glory to experience joy and peace eternally with our Lord and Savior, Jesus Christ. I know that Steve's faith carried him through the suffering he knew that lay ahead of him when he was diagnosed with ALS. His spirit was strong; his smile and sense of humor still evident long after he lost the ability to speak. What bravery and courage he displayed for all of those who knew him. I shared my e-mail updates with him during the water conference committee hearings this past fall. He replied one day, taking great glee that nothing much had changed in his absence and admonishing me to keep up the fight.


Steve and I first met when I worked as the senior consultant to the Assembly Water, Parks & Wildlife Committee in the mid-1980s and Steve was head of a San Joaquin Valley farm water coalition forged during the Kesterson Reservoir agricultural drainage (selenium) upheaval in the San Joaquin Valley. Water deliveries were threatened; farming was threatened and entire communities held their collective breath. Steve swung into action in the State Capitol, admitting to being out of his element, but one would never know it. He accompanied then Assembly Member Jim Costa and me to meeting after meeting, hearing after hearing. We took on those interests and powerful legislators who would rather see farming in the west side of the San Joaquin Valley abandoned and won a 3-year reprieve for farm drainage ponds from the Toxic Pits Cleanup Act.

Our paths did not cross again until Steve was named Executive Director at ACWA. I was General Manager of the El Dorado County Water Agency at the time and I was asked to take part in the effort to rejuvenate and reorganize ACWA. The personal characteristics that Steve demonstrated in our earlier work together remained when I worked with him again in our respective new roles. His leadership qualities, his ability to listen, his steadiness, his ability to slow down for his members when necessary were becoming more evident to those who did not know him before he took over the leadership of ACWA. He wasn't perfect mind you and I do not intend for you to reach such a conclusion. Steve would be the first to counter any such contention.

I left the El Dorado County Water Agency in the summer of 1993 and embarked on a 2-year adventure in public finance investment banking. My timing was poor as the bottom of the municipal finance market fell out after a historic run of refinancings made men and women in the industry wealthy. I suffered two layoffs within 13 months of each other. In May 1995, I came up to Steve at the ACWA Spring Conference at Lake Tahoe following a luncheon event. I just wanted to say 'hello' and renew our acquaintance. He greeted me warmly and spent a few minutes getting caught up as staff and members swirled around him beside the head table. He asked me if I ever came through Sacramento and if so, could I stop by to visit. Something told me this was more than Steve being gracious, so I called his assistant Audrey Ryder the following week. He and I met about two weeks later and he shared with me that he was thinking about reorganizing ACWA staff--would I be interested in coming to work at ACWA to lobby for the Association? I told him that I would be interested. He said he had a long way to go in the process, a lot of people to talk to, other candidates to think about, an executive committee and a board of directors to convince--if the reorganization occurred, it could be 6 to 12 months away from happening. Four weeks later, while I was assured by the partners of the regional investment banking firm where I worked that they thought I had a future in public finance, they asked me to stay on without pay--relying solely on commissions for the immediate future. Since I hadn't earned a commission in two years while at two firms, and I had a family and mortgage to take care of, I asked to be laid off. I called Steve from a pay phone in Walnut Creek about an hour later. I asked him if he had thought any more about our conversation. He said that he had and asked why I was calling. I told him about getting laid off. He said he would get to work on bringing me to ACWA. I started working at ACWA in the new position of State Legislative Director on August 1, 1995--six weeks after that telephone call!


There are too many funny, too many interesting political and workplace stories to share here--many intensely personal and private experiences that will remain between Steve and me.

Steve was always very health conscious and very athletic--playing tennis with Jim Costa and others; golfing with Mike Dillon and others; playing basketball (and blowing out an Achilles tendon). Well, even with all of that physical activity, he returned from an annual check-up to share that he had high cholesterol and needed to take better care of himself. He tried mightily to stick to a healthy diet. I can't tell you how many times at ACWA department manager meetings during that time that the managers laughed amongst ourselves as Steve--over the course of an hour or two hour meeting, started out eating just one quarter of a muffin or doughnut, only to go back three times to end up eating the remainder of the muffin or doughnut--I guess it had fewer bad calories that way! Well, this lead to one of the few lighthearted moments that came after Steve was diagnosed with ALS. He was still working at ACWA, but at that time confined largely to the JoyRider to move about. I happened to be visiting on the second floor of ACWA HQ one day when Steve came around the corner toward his office with the largest chocolate-covered raised doughnut on a plate in his lap that I think I have ever seen . I said: "Well, I can see you're not worried about your cholesterol buddy!" We both shared a laugh.


I am blessed to have known Steve Hall; I am a better man for sharing a part of my life with him. Words are wholly inadequate to describe the loss I feel tonight. He deserved much better from life, but had no complaints.

Some of you knew Steve well, some of you were acquaintances and some just knew him by observing his work at ACWA. Please feel free to share this small remembrance with others as I do not have all the e-mail addresses of friends and colleagues here at home. Please keep Steve's family in your thoughts and prayers.

Bob
Reeb Government Relations, LLC
1107 9th Street, Suite 510
Sacramento, California 95814
PH: 916-558-1926
E-mail: robertreeb@comcast.net