Friday, July 16, 2010

Day 7 Phase 2 Important Diagnostic and Treatment facts

There is important news. Careful thought has gone into this post; I don't want anyone to suffer "tmi." I want readers to understand the content.  Here goes.

Dr. C (Chernofsky is too long to type out every time.) gave us a comprehensive explanation of the situation and the course to follow:  get stronger and do surgery in, say, the third week of Sept.  This an "endometrial" sarcoma.  It started in some uterine material left over from the total hysterectomy performed 24 years ago. Dr. C said there was some other tissue there too; she said "sarcoma." This is complex.  My messages cannot be considered the absolute truth or "audit-able." Dr. C did say that this type does not respond to Chemotherapy.  Therefore, no chemo currently planned.  

We see the surgeon tomorrow morning.  It's a follow up from the surgery. I'll report on that tomorrow.

Susan is up and active more each day. She is getting good nutrition. No supplements have been started.  I imagine there will be some used soon.  She takes naps both in her tilt back "Mazerati-grade" wheel chair and in her bed.  We are still screening calls; it's hard on her to engage in chats.  Messages via Email are easier on her.  

Tuesday, July 13, 2010

Day 5 Phase 2 More normality each day

Susan is doing better and better each day.  She had her first real shower today; she loved it but it was tiring.  She's now resting (zzzz'n away).  She is up much more of the day than in the past.  She slept very soundly last night with no trouble going to sleep.  The colostomy is becoming routine.  When we get the products we want tomorrow from the provider, we'll be in like Flynn.  (Who's Flynn, anyway?)  The materials will be totally covered by Medicare and GEHA. We have been blessed with the Federal Employees Health Program for the rest of our lives.  There is no need for (nor wish by the recuperating one) for Nursing service; pieces are healing nicely.

Jo and Michelle, two of Susan's oldest friends from UNC days, were here from Thursday through Monday.  They fired me and Pam as PA's for Sat. & Sun.  Pam had two days off after 22 days with one day off. I actually played 18 holes of golf and enjoyed it tremendously. We have doc appts Wednesday for medical oncologist and Friday for surgeon.  The gynecological oncologist is trying to get us on the phone.  Tele tag with docs is even harder than with us regular peeps.  I think she has the pathology report from Mayo.  And the Louisiana hospital apologized that post Katrina flooding destroyed >400k records. Susan's was surely one of them.

I apologize for not posting every day; I will post when we have some news to distribute. So, if you don't see a post it means nothing dramatic is happening.  If you are a "follower" of the blog, I think you will get a notice when a post is made. Not sure if that's correct; it seems logical.

And so it goes. . .

Love, John

Saturday, July 10, 2010

Day 2 Phase 2 July 10, 2010

A day that begun with waking up to a gently falling rain; something has changed in our weather.  The blast furnace, the Greek Steam Bath gone berserk on steroids has gone away.  Opening the patio door this morning after waking at 7 was wonderful.  No blast of steam or radiant heat.  Mother Nature smiled on D.C. today.

Jo and Michelle came to be caregivers to their Sistah Susan.  They fired me.  I couldn't do anything for Susan except give her kisses and hugs.  These old friends know how to do everything.  I am posting at nearly 10 PM.  I'll be sleeping within 30 minutes.  Healing and strengthening is happening every day.

Love to all of you. John.

Friday, July 9, 2010

Fwd: Day 2 Phase 2 July 9, 2010

From: John Watson <>
Date: July 9, 2010 10:12:55 PM EDT
To: John Watson <>
Subject: Day 2 Phase 2 July 9, 2010

A wonderful quiet day was spent at home --- really at home.  Old Friends Jo and Michelle were here to do lots of practical assistance and even more spirit raising. These two women have known Susan for at least 120 years.

Friend and colleague Lisa Eckman brought a huge dinner over, which was chicken parmesan and eggplant parmesan with at least 2 gallons of homemade chicken noodle soup for Susan.  There won't be a need (or space) for any more dinners brought in for several days.  Pam gets a day off tomorrow; second one in 25 days.  Is she to  be adored, or what. Adored, cherished, honored and loved deeply.

Now it's time to lay me down to sleep perchance to NOT dream.  We'll see. . . . John

Day 1 Phase 2-July 9, 2010

When the scene shifted from Sibley Hospital to HOME, the whole screen play changed.

Transport was via accessible cab thanks to Gale May, who should be used by anyone visiting D.C. -- wheel chair or not.  Being discharged was a bit of a tiring exercise.  No matter how well you work to have things move at a moderate pace (can't wish for fast), a person winds up waiting...waiting...waiting. Finally, on went the blue knit dress, about which Susan noted "I haven't seen this dress for a while."  

At home the primary care team (Mary, Bob, Pan and me) shifted into a different kind of work.  I zipped to the pharmacy and grocery to get the helpful meds and some "proper" food for Susan.  Mary and Pam helped her from chair to her own bed (Tempurpaedic Topper and rising head and feet).  Soon she had her TV and bed remote in her control. I fed her a few bites and sips.  Then she went to sleep.

Mary and Bob began their preparations to return to their regular life.  Pam zipped off to Baltimore and into her regular life.  Later in the afternoon, two of Susan's oldest friends (not in year of age but years of friendship) rang the bell after having requested and received permission to come aboard. Jo Vaughan and Michelle Morgan had come from Sacramento and the mountains of New Mexico to see their dear Sistah.  If anyone of y'all (not family) have known Susan since before the early 1970s let me know.  You can be one of the "oldest" too. :)  The joy and pleasure of their visit lifted Susan's spirits high, high, high.  She said she feels "lifted up by so many caring hands."

A quiet evening ended early for all. M&B took off to NC to get south of Richmond before over nighting; they miss any and all rush hours and have an easy cruise back home.  Michelle and Jo were settled into a hotel near Dupont Circle.  They will be returning today.

I found myself sleeping until 7 this AM.  I've gotten used to the 5 AM rising but sure appreciated the extra ZZZZ time.

More in my next post.  John

Thursday, July 8, 2010

Day 24. Liberation coming today.

Finally, Dr. Palmer has decided enough is enough. Right now, 0915, Susan is having a tube check.  If there is no dye in the small intestine, pop -- out it comes.  If there is some dye, we are still going home.

I will post later today from HOME!!! Love to all.  Thank you for your thoughts and prayers.

The campaign to get Susan stronger continues.  John.

Wednesday, July 7, 2010

Day 23. At last some action BUT more waiting.

This AM Susan's surgeon, Dr. Palmer, visited her room.  He removed the stitches and the "bungy cords" on her incision.  He said the left side ostemy can be covered with a bandage instead of a bag.  He ordered a tube check.  Radiology was extra busy but they would try to fit her in.  It didn't happen.  We all waited and were disappointed.  Susan enjoyed her "full liquid diet." NOT!!!! After tucking her in tonight, she said: "Go to the cafeteria on your way in and bring me some grits, butter salt & pepper and coffee for breakfast." She has begun to take control of her life, and still, she is patient with the confinement knowing she is getting great nursing care and family love.  She'd rather be in Sibley than elsewhere with IV stuff in her.

If the tube check shows no dye in the small intestine, it will be disconnected and a 24 hour count down will start toward her discharge.  If not, we'll have a heart to heart with the surgeon and not accept any more waiting for a surgeon's inadvertent error to correct itself.  I said it.  I believe it.

With love to all,

Tuesday, July 6, 2010

Day 22 another day of ennui

Well, we were up early with complete bath and hair shampoo. We waited to be called to radiology for a tube check.  NOT!!!! It was not ordered last Friday -- the last day Susan saw any of her doctor's team.  So we waited patiently, sort of.
Dr. Palmer, the surgeon, came in finally about 6 PM.  He didn't spend any time with us.  He only said "you can eat full liquids."  (He actually had to rush down to surgery.)  
So, we immediately ordered some of that wonderful liquid food. Don't ask.  It will probably not be a bowl of red beans and rice, or a sautéed soft shell crab with hollandaise sauce. Don't we wish.
More on this long epic tomorrow.

Good night with love.  John

Monday, July 5, 2010

Day 21 Tick Tock Tick Tock

Saturday and Sunday were seriously "wait" days.  The only medical treatment Susan is having is "wait."  Not much difficult about that.  We did have the pleasant company of Jerrilyn and Tim Herd, who passed through here on their way to the Big Apple.  Jerrilyn took care of Susan for the whole day on Sunday.  Then she came to my place and made us all a delicious dinner.

Today?  What else: wait.  Susan was serious about the getting stronger today; she slept  quite a bit.  The itching seems to be subsiding.  Her antihistamine and hydrocortisone cream are working and her system is getting cleaned out of all the chemicals modern medicine has been putting in her. 

Tomorrow we are anticipating another tube check.  We don't know if it has been ordered yet.  It would be nice to have it early in the day.  That's probably wishful thinking.

Mary and I and Susan have decided that visitors take too much out of her.  So, no one should visit her in the hospital.  If all goes well, she should go home tomorrow or Wed.

And so it goes. . . Love to all, John.

Friday, July 2, 2010


When I came in to the waiting room, Mary and Bob hailed me. Susan was
in the radiology world getting the tube text. She came back few
minutes later saying there was still a trace of dye going into the
small intestine. No word from the doctor. So, we are here.

Day 18 and still waiting, waiting, waiting. . .

The surgeon told us last night that there would be a tube check tomorrow (Fri).  We were all waiting to be called down to radiology.  Then we learned it was just this morning ordered by the doctor for ASAP.  The radiology lab said they will try to squeeze her in. The first one was Monday.  The fistula was definitely connected to the small intestine.  A dye is squirted (probably not a medical term but that's what they do) into the tube. And then the radiologist looks at a screen to see if the dye goes into the intestine. If so, it and the tube are still connected.  The drain is collecting only a tiny amount -- if any.  Should the tube check show no connection, boom!!!!  We're outta here!  No one has their hopes up.

Flash:  as of 3:15, there has been no tube check.

The days seem to crawl very slowly.  Of course if all you can do is watch day time TV, it will seem endless.  Susan has begun joining Pam in viewing the "judge" shows and the Jerry Springer wannabes.  They are hilarious and clearly demonstrate the vast and deep level of ignorance in some of humanity.  Today Susan has been up (in her chair) since 6:30 AM.  She had some strawberry pink rash places around her body.  The cream and a dose of antihistamine plus a pain pill seems to have alleviated the morning's discomfort.

You all may be wondering what the life of a care giver is like. I truly hope you have more important things to think about.  I'm doing a split shift; I help get Susan up out of bed about 7.  When Pam arrives about 8, she takes over for the ADLs.  Then Mary and Bob arrive before 9.  Unless we are expecting something to happen soon, I leave Pam and Mary and Bob in charge.  I return for a 4:00 to bedtime tour of duty.  I help her into bed and adjust all the pieces.  Pam leaves in the early afternoon as soon as the personal care chores are done.  Mary and Bob stay until 4, and then they have the afternoon and evening off.  None of us are hooting with the owls at midnight. I guess we're too old for that.

Today, Susan had her hair shampooed by Mary and Pam using Mary's Japan method. A tiny amount of shampoo is diluted in water, agitated and applied very sparingly.  Suds it up and scrub.  Then a wipe off and a rinse.  Mary uses a ketchup squeeze bottle for both the shampoo and the rinse.  Towels catch any run off. This controls the water volume. Voila! A quaff to be proud of.