Friday, October 21, 2011

The Final Post at Caring for Susan

October 21, 2011

Did you feel it?  I'm sure you did.  The world screeched to a stop yesterday at 4:35 P.M.  Our dear Susan had to get off.  In the morning the pulmonary specialist called the four family members (sister Mary, brother Harry, Mary's husband Bob, and me) to a meeting with Susan.  He was very honest and gentle; he also was wise enough to know that no M.D. was going to dictate anything to Susan.  She still had sepsis; the origin was unknown.  Her already polio compromised lungs had suffered an acute injury.  Her health status had declined each of the last three days.  He made no recommendation; Susan decided to wait to talk with Dr. Chernofsky.   You may remember her as Susan's "Warrior Princess" who saved Susan's life by excising the sarcoma from her abdomen.  She (and her other colleagues) had done everything they could do to help  Susan live.  All the medicine possible, all the assistive technology available, and all the strength and  hard work they could do were not enough.  Susan was exhausted from fighting.  It had become an almost impossible task to just breath.

After a brief conference with the Warrior Princess, Susan decided that enough was enough.  She gave the order for the pressurized breathing machine mask to be removed.  The  marvelous group of RNs in the Sibley ICU helped us make her as comfortable as possible.  The IV pumps were shut off; the monitor showing the various measurements was turned off.  We were there -- sister, brothers and husband and close friends who could reach the  hospital.  Her labored breathing continued but became less and less difficult because the humane and sensitive health care professionals administered pain relief several times.  After some time, which seemed like years but was only a few minutes, she stopped breathing.  She was free. She was released.  She felt no pain.  She was no longer struggling.

Every day of her life, three days short of sixty-three years, was a fight.  It was a fight for life.  She was amazed that she had lived so long; most people would have given up decades ago.  Not  Susan. . . no way. . . no how!  She lived a life filled with love received and given, a life having made a huge contribution to society.  A very close friend and colleague said in remembering, "No one who knew her will ever forget her.  She had more than a life well-lived.   She set the highest bar for humanitarianism. She is my greatest hero. We were so lucky to be in her company of friends and to share the light that emanated from her."

This is a time for grieving.  Each of us will do it in our own way.  Some of us will never be done; I  know I  will never cease.  A  time is near for honoring and remembering her.  Another friend said, (I couldn't say it better.) "Susan was a force. She impacted more lives than most anyone I've ever met. She had a phenomenal impact on every person she met. She was at her best when she was on stage, yet had the ability to glue people to her with her eye contact. She was FUN, Brilliant, Positive, Charming, and just an overall AWESOME PERSON!!! I know I am a better person for having known her. I believe all who knew her would concur."

She is now and will always be with me.  I know she will be with many of you.  No one can take her place.  Nobody will ever be her equal.  All of us can only try (must) to live our lives as she lived hers:  giving love, dedicated service and never ending perseverance in striving for humanitarian goals.  Join me in honoring her life and her self:  a life truly well lived.

Love to all of you.  John

Monday, October 17, 2011

Post for today

October 17, 2011 1530

The message of this post is positive but guarded.  Like Dr. Chernofsky said, "I'm not going to say critical because critical means something awful could happen any minute. We're not there now."  She's still in ICU. This is day 6.  She got rid of that horrible gastric drain tube in her nose.  Her breathing is being augmented with a hose to the nose -- not the tiny tube -- a real hose with some push behind it.  She is feeling better today than yesterday.  

Late yesterday afternoon she told her nurse Ed, "I'm feeling better; I'm not going to go anywhere."  Her complexion is a bit more normally rosy -- not the red from being hot and bothered.  She asked Pam and Jo (from CA) to keep her stimulated and not let her doze off during the day.  She wants to sleep at night; this means Susan is being more in charge than in the past.  The care team is still with her 24/7.  She is such an anomaly, physically, that many health care people don't really understand her situation.  One of the nurses asked her if she was going to use a walker when she could get up.  Another casually told her to turn over onto her left side. Not alone she can't.

We will have more to report as time goes on.  Thanks for you caring.  Love to all, John.

Thursday, October 13, 2011

October 2011 Post #3 at Caring for Susan

October 13, 2011

Three days – it seems like thirty. The hours have moved by at a snail's pace.  The ordeal of Tuesday's surgery has passed.  The doctors were busy for seven hours.  The rest of us waited.  I guess I've adopted some of Susan's distaste for waiting during our 20 years together.  It was awful; Mary and Bob and I were almost the last waiting family members when both doctors came out into the waiting room. 

They explained a critical and complicated situation, which I will leave to Susan to tell to those she wants to know.  Survival is the first goal.  Day by day was a phrase they used a lot.  After thirty-six hours, I believe survival is probable.

Susan is still in the ICU being cared for by a team of absolutely angelic nurses and intensiveist doctors (a new specialty that focuses on critical care patients.)  I'm not sure Logan or Matt would want to be called angelic but what the hey!  They are so gentle, caring, thorough and true health care professionals.  This episode did not result in fluid in lungs so the gravity was a bit lower in scope.  The people using the tools have made Susan as comfortable as possible.

She will be in the ICU for some more days; specific dates are not good to give out.  There can always be setbacks.  Your messages of care and love are received with warm gratitude. Thank you all.

Monday, October 10, 2011

October 2011 Post #1 Caring for Susan

October 10, 2011.

Dear Family and Friends,

After a late summer with little bumps on the road to enchantment, Susan is going into Fall with another major surgery. She has been in Sibley Hospital, 5255 Loughberry Road, Washington, DC 20016 since Thursday 10/6. Taking care of what we thought was a situation that would improve became impossible. Enduring the raging skin pain was driving Susan to her wits end. Finally, she just said, "Pam, we're going to the hospital."

Having been admitted and examined by the CT scanner and Dr. Chernofsky, a clear diagnosis was reached. Dr. Palmer (from the June 2010 life saving surgery) is now in charge. There was no evidence of any return of cancer. General surgeons see the condition Susan has very often. So, surgery is scheduled for Tuesday, October 11 in the P.M. Susan is in a strong state; she has all the positive clinical signs and will face up well to this much shorter procedure than either of the 2010 surgeries.

Mary and Bob have arrived. They will be here to support Susan's recovery. I don't know what brother Harry will do. He's been hard to reach because he left his phone in California.

More will come when more is known.

Monday, November 22, 2010

Recovery Day 12 Post She's Home!!!!!!

11/22/2010  1730  (05:30 PM)

Susan was discharged today about 1 PM. We got a great ride home on a partly sunny day with cool but pleasant temperature.  Of course the residents of VNNC were glad to see her.  She quickly took a nap for nearly 3 hours.  We won't be doing much different here than in the hospital.  Just being home makes all the difference needed.

I think I'll close down this blog now.  Thanks for caring and sharing.

Love,  John.

Sunday, November 21, 2010

Recovery Day Seven Post

11/20/2010  2110  (09:10 PM)

Okay, I just felt like letting you know what's happening.  Susan has on her diamond ear rings and her own personal nightgown creatively adapted by Sistah Jo to work like hospital gowns.  She's wearing makeup and even cruised down to the cafeteria to have lunch with Mary today.  She's sleeping very soundly especially since she instituted the Do Not Enter after 10 PM or before 6 AM rule and posted it on her door.  The health care team at Sibley honors her requests.

Progress continues; nutrition is consumed.  Things look good enough to go home -- maybe tomorrow.  I'll be posting as soon as we know.

Love,  John.

Thursday, November 18, 2010

Recovery Day Seven Post

11/18/2010  1110  (11:10 AM)

Wednesday was a busy day for Susan.  She is determined to follow the recovery regimen as designed by Dr. C.  She was up and in her wheelchair and doing a good job of eating.  She is managing her own medicine usage.  She did say she didn't want the dillaudid too often because she wants to stay awake.  Good sign.

Keeping her comfortable when she is in bed calls for creative lifting, stretching, twisting and propping up.  Susan manages us very well. 

From now on, posts will be made when there is news.

Love,  John.