this time last year

May 10, 2009...my sweet husband

four  months later...Sept. 2009

After suffering respiratory failure due to 35 radiation treatments on his throat Bob was "off and on" a ventalator in ICU at Baylor Hospital , Plano... from Aug 20th until Sept. 5,   (16 days) ...He  was then transferred to Kindred Rehab Hospital, Dallas...We were at Kindred from Sept. 5 until Oct. 2nd...He remained in ICU   for the first week there...while in ICU  I was allowed to use a room on the second floor, when he was able to leave ICU we were given a double room and I was allowed to stay with him day and night..

By the middle of the month he was strong enough to be out of bed for a while....his physical therapist ..she called herself "Sarge"..... worked him hard..

Brian was his radiologist

Barb, David and the little boys came for a visit

we were counting off the days...wanted to be home by his birthday Oct. 5

 Sept. 25.. after seven weeks in the two hospitals he was able to go outside for the 1st time

his trech was removed on Sept. 30th.

Oct. 2nd...going home...going home...going...he smiles :)



OCTOBER THRU APRIL 13  TH.

He worked very hard for the next six months trying to recover...



The  following is a post from Oct. 24

after having had another scan...

He had just stepped out of the shower... sitting on his bathroom chair ...I was drying him off....he was cold...the phone rang...I threw a towel around his shoulders ...running from the room I said "it may be the doctor"...it was.

"good news...looks like we got it all...he's cancer free"

 it looks like?

"The original site is clean"..

he continued.."there's one lymph node in the neck we want to check further...probably just scar tissue...we'll do a CT Scan next week and if it lights up we'll just remove it." ....(if it lights up?)

Now this part is even more strange...I returned to the bathroom and relayed the message to Bobby...all he did was put his arms around me to comfort me as I shed tears (of course) into his neck.

He said nothing.

"Aren't you relieved?"...

a mild "I guess so."...

"you guess so?"

"hadn't you considered the possibility of the treatment not being successful?"

"not really...it's hard for me to get excited about anything .. there's so much wrong with me."

and he was right...there was much wrong..he was too weak, too sick to survive the illnesses that ensued the following five months...pneumonia (twice), sinus infections, edema (fluid accumulation in his throat and arms because of damage to lymph nodes, skin tears that wouldn't heal, arrhythmia, blood clots, continued weight loss, the onset of diabetes and high blood pressure, low oxygen levels, co2retention, seizures,  many, many drugs, headaches and eventually a fall that caused brain injury...too much, too much..first he could not walk or stand, then he could not sit  could not hear, could not speak, could move only his arms, rarely opened his eyes...could not breathe.

..........   this time last year.........

The Dance

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Four Months

121 days....without you
121 days....waiting for it to get easier
121 days....wondering where your  soul is
121 days....wanting to be where ever you are
121 days....wishing, regetting, remembering

121 nights....alone

Lincoln County Tennessee

Last month, the last time Bob was able to go for a ride, we drove to Fayettville, Tn., just about 15 or 20 miles north of Hazel Green...We got off the main hwy. - 231/431 - onto county hwy. 275 and enjoyed a  picturesque drive through the countryside.  We came to a four way stop and saw this lovely old church and cemetary......As Bob and I have always felt we would prefer to be buried in a place such as this...peaceful and quiet... Barb checked it out for us last week...Bob's body will be laid to rest here tomorrow...and someday my body will be beside him.

Alabama Doctor #4..good news/bad news

Richard Hull...Neurologist..
Even tho Bob was unable to sit, stand, or stay awake we managed to get him in to see a neurologist ...not the one who Dr. #1 referred to while he was hospitalized a couple of weeks ago.....the one who never even saw him but ordered the EEG and Scan and from those concluded that he had had a stroke...prescribing the anti-stroke med Keppra and that the "seizures" were most likely caused  by the stoke.
We now have use of a hoyer lift and a hospital bed.  We were able to get him straped into his wheetchair and out into a hanicap transport service van....He did not have to transfer from chair to car, back to chair etc..
Dr. Hull studied the scans, reports, etc...listened to everything that Barb, Laura and I had to say and concluded that ..good news...Bob had not had a stroke...but did show brain injury...resulting from the very hard hit his head took when he fell a few weeks ago. He said that one can recover from brain injury but it takes a long time....he also said that Bob was not having seizures.....(took him OFF Keppra) .he called them "spells" most likely resulting when his blood pressure bottoms out whenever he transitions. We've since attempted to take his blood pressure lying, sitting and standing to substanuate this theory but unable to do so as he cannot sit or stand. Not sure where this leaves us...
Laura asked him if he felt that Bob would recover and...bad news...he said no...too much radiation, chemo, infections, respiratory distress,  pneumonia,  age...He has suffered much and it breaks my heart to see him like this but I'm not ready to lose him.
I received this encouragement from a friend recently..
"Dear Charlene,
We feel helpless, sorry and sad. And so we pray often through our days and trust the Lord to give you the courage and grace you need as you watch your beloved go through the valley and slip away from you. We know that He will hold you close..your family too, and the loving Shepherd will have Bob's hand in His as they approach Heaven, our final home."
It helped me, for even just a moment, to reflect on Bob being in the arms of our loving Jesus..

April 2009...Better days...

New Challenges

Did the seizures cause a stroke or did the stroke cause the seizures?
Which caused the
 "numbness or weakness of the face, arm or leg,
 confusion, trouble speaking or understanding
 trouble seeing in one or both eyes
 trouble walking, dizziness, loss of balance or coordination
 severe headache with no known cause" ??

His headaches have not been sudden...he's had them since last summer after treatment started....but after CAT scans and MRI's the cause is still unknown..

Bob has been forced into the  position of being even more dependent on others for things he once did himself. Presently he is unable to stand, walk or even sit up without assistance.
He is still  having little seizures whenever we help him sit up or move from the bed to the couch or recliner.
My desire is that the therapy we can obtain through Home Health will be sufficient to keep him out of a rehab hospital...and that I will stay well and strong enough to give him all the care he needs...for as long as he needs it.
We will have a hospital bed for him in our new house, which we hope to move into this week. I will put it in the living room where there are lots of windows and he will be part of whatever activity goes on there...instead of being back in the bedroom, secluded.

Our two boys and two youngest grandsons will be here from Texas this weekend for a few days

"I returned, and saw under the sun, that the race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favour to men of skill; but time and chance happeneth to them all."

 

Ecclesistes 9:11

Here we go AGAIN

INSTEAD OF A VISIT TO THE DOCTOR ON THURSDAY WE FOUND OURSELVES AT THE HOSPITAL....TIRED OF HEARING ABOUT  HOSPITALS?  WE'RE TIRED OF LIVING IT!!!!
THE SEIZURES ?  HE EXPERIENCED WED NIGHT AND THURS AM  RENDERED HIM TOO WEAK FOR AN OFFICE VISIT......SOOOO..ANOTHER 4 HOURS IN ER AND NOW OUR FOURTH DAY HERE...HOPEING TO GO HOME TOMORROW...NO PROMISES THO..

FIRST  24`HRS HIS HEAD WAS WIRED UP LIKE YOU WOULDN'T BELIEVE! EEG...NOTHING,,,
YESTERDAY AN MRI..TODAY, SUNDAY, JUST  WAITING TO SEE A DOC...FOR RESULTS...IF NOTHING SHOWS UP HE  SAID SOMETHING ABOUT A SPINAL TAP...EXCUSE ME1111 /THAT SEEMS LIKE A MIGHTY BOLD MOVE.  GONNA HAVE TO TALK  SOME  MORE ABOUT THAT.

HE HASN'T BEEN ALLOWED OUT OF BED AND THAT BOTHERS HIM A LOT . THE LONGER  HE LAYS THERE THE WEAKER HE BECOMES, HE WAS UNABLE TO SLEEP LAST NIGHT AND WAS GIVEN   ..SO HAS  BEEN  SLEEPING MOST OF THE DAY.

ONE OF THE DOCTORS JUST STOPPED BY...THE ONE COVERING FOR HIS ONCOLOGIST WHO IS OUT OF TOWN....HE TOLD US THE MRI  SHOWED  STROKE ACTIVITY..BUT NO CANCER.  WE WON'T SEE THE NUEOLOGIST UNTIL TOMORROW.

STAY TUNED...........

March 3rd. and it's snowing again

Yesterday we had a break...no appointments.

Today...Bob's physical therapist..he won't be able to participate to any great degree as he is still unable to stand...and is asleep most of the time.

Tomorrow...appt. at Hunstville Hospital, outpatient surgery, to have his IV port removed.  Dr.#1 decided to have it removed as it is causing the blood clot in his arm and he has taken him off coumadin because of his propensity to fall...does not want to chance bleeding from an injury while on blood thinner.

Thursday...appt. with a nurologist ...hope to find out what is causing his seizure-like  episodes..and what to do about them.

Friday...his speech therapist..and, maybe, whatever results from Thursdays ' appt. will involve us in.

Next week we should be able to start moving our things into our "cottage"...Thank you, Lord!...tho it's been good being here with Barbara and David...we'll only be 20 or so yards away from the "big house'...I'll miss their company but it will be so nice to have our own "things" around us once again....and it will be fun decorating our new home.

A Wonderful Day

Bob slept most of the morning...headache prompted Tylanol which sometimes puts him to sleep...this afternoon he felt well enough to go outside and sit on the front porch and let me trim his beard...then he used his walker and walked around to the back yard...we didn't try to go into the cabin...too muddy and he was tiring....doesn't he look great...

Living With Cancer...Week 41

What a roller-coaster ride we've been on:
...
While showing some inprovement for a while, Bob still continued to sleep ALL THE TIME...just didn't want to stay awake.  On Monday, Feb 8th. this condition, along with choking episodes and a sudden, high  heart rate prompted another 911 call and our fifth hospital stay in the last 9 months. Three days in ICU, two days "on the floor", another three days in ICU and then another two days "on the floor"..released today..

A trip down his throat (via his nose.UGH)  by Dr. # 2  (ENT)  revealed that his airway had become seriously constricted. This led to the conclusion that his present condition was being caused by high levels of CO2.

 "CO2 retention is a pathophysiological process in which too little carbon dioxide is removed from the blood by the lungs. The end result is hypercapnia, an elevated level of carbon dioxide dissolved in the bloodstream.
As CO2 levels increase, patients exhibit a reduction in overall level of consciousness as well as respiratory effort".

Radiation damage to the blood vessels and lymph nodes in his neck caused inflamation and swelling in his throat..thus his breathing  became impaired.  Dr. # 3 was called in (Pulmanary)..

"You're damned if you do and damned if you don't"...Without treatment the cancer which he was diagnosed with last May would have already taken his life...now the treatment results seemed to be trying to do the same.

Day two a tracheotomy was done..   Prayer request #1..that this will not be a permanent condition.

Next, he developed a blood clot in his arm...the side his medport is on...Dr. #1 (Oncologist) is reluctant to remove the port as he is needing so many injections and infusions. He started blood thinner, a steroid, another  rx. for treating blood clots...and lasix for fluid retention.

Next came arrhythmia....his heart would speed up and slow down...irregular heartbeat..EKG's,  a move back to ICU and Dr. #4(Coronary)... more rx. for that..

Sometime during the week he recieved blood transfusions.

Believe it or not...he got well enough to come home ... his heart rhythm is  back to normal and, with the trach, his breathing is normal....'will most likely take another few weeks for the blood clot to dissolve.

We'll start "home health" again  tomorrow...being flat on his back for 10 days will put him back to square one.  HOWEVER, as his last PET cleared him of cancer he is eligable to receive VitalStem Therapy.
 
"VitalStim® Therapy is a non-invasive, external electrical stimulation therapy cleared to market by the FDA in December 2002. The therapy uses specifically designed electrodes applied to the muscles of the throat to promote proper swallowing."

This procedure has been very successful in correcting damage in the throat that prevents swallowing.  I'm very excited about the possibility that he may be able to swallow again ...Prayer request #2 :  He would have to be able to have the trach removed to accomplish this.

We're so glad to be home.

feeling better

Good...Good...Good..
Today Bob felt well enough to go outside and into the cottage for the first time ..

The time in between

Yesterday was a special day...I attended church for the first time since we received the news that Bob had cancer...April 2009...Our absence wasn't that we had given up on our faith...Bob just felt uneasy ...did not want to be the center of attention...a distraction....as his illness worsened it became more and more difficult to try and go about "business as usual"....nothing was "usual" for us anymore. I'm sure we missed out on many blessings but some of our church friends came to visit us at home and/or the hospital...to pray with us, play their guitars and sing, offer encouragement.

After being blessed by our church for so many years, the sermons, the friends, the fellowship, the sharing...the worship, the awarness of the Holy Spirit among us...I was anticipating it a bit...would it be the same? could it be?...well, not exactly...the sadness in my heart did not lessen but the gratitude I felt for Him and His love for us overwhealmed, as usual...and it was comforting to be among fellow believers..to hear familiar hymns.
Barbara's best friend, Lori and her granddaughter sang a duet..."The Time In Between"...it speaks of the writers gratitude for Jesus' life..the time  between birth and death...between Bethleham and the cross...to leave heaven for life here on earth..

however,this is the verse that I related to the most:


Don't take much for this crazy world



To rob me of my peace


And the enemy of my soul


Says You’re holding out on me


So I stand here lifting empty hands


For you to fill me up again

Watching and Waiting

This is where Bob spends most of his day...watching the cabin being built..

no workers today...much snow, some sleet and very cold.

His physical therapist managed to get here before everything started shuting down...

Another Good Day...four in a row !!!!

It was pretty cold but Bob and I sat outside yesterday for 15-20 minutes...watching the carpenters work on the front porch and continue putting up the siding..

I purchased a web cam and Brian and I "skyped" for about half an hour after school...then for another half hour last night...with Eddie and Bobby...Bobby played his saxaphone for us...its great fun to be able to see one another while talking long distance like that...and except for the cost of the web cam (about 30$) its free! I'm hoping Laura will get one so we can also see one another while conversing..

The postman delivered a wonderful gift from our friends in Texas...Joe and Chris Santee (our "Care Group" leaders) made a DVD for us...He recorded our church friends saying goodby to us....our Care Group, Bobs Saturday morning mens prayer group,  his Wednesday morning "breakfast" group, ...what a blessing it was to see all of them again...and for Joe to take the time to carry his video cam to those functions....very special people. After Bob watched it his comment was "Those are the best people in the world."...amen to that.

and also...
the golf cart I purchased was delivered...can't wait to get Bob out in it...it will provide mobility for him...around the property (3 acres)...coming and going from our house to this one...we can even ride over to Ron and Beckys (who live in the neighborhood).. :)

Things to do at 3am

First....make a pot of Dunkin Donuts Hazelnut Coffee...guarenteed to help you get back to sleep  Duh
Second...see if you can find any biscotti's left over............good for the figure....Duh

then check your email and spend a couple of hours on the computer...
The next thing you know it 5:30 am...............



My only "real" email buddies were my family and friends here in Alabama and as I now reside here and see them every day  my inbox is usually only full of junk...
however there was a message from my 15 year old grandson in Texas...What a treat!...the one who hardly has three words to say when we were together now sends me emails :)   I LOVE IT...

I seem to have had a writers block of late...(not that I was ever very literary...)
Laura, in Texas,  calls most every day...Herk and Nicki, in Texas and Chicago , don't do "computer"...so I know they do not see my blog...

There has been much going on...
First and formost, Bob is getting better!!! He often walks short distances (from room to room) and is awake more of time....he even watched a little football this past weekend.
Yesterday his doctor said his lungs were pretty clear of the pneumonia and has ceased his IV antibiotic and we are weaning him off oxygen..Praise The Lord! 
He has been a wee bit ornery and stubborn at times, which is a good sign!...
I am less reluctant to leave him with others...I attended a baby shower on Sunday and yesterday I had a minicure!

'Still cold and rainy here...

 

going downhill

He seems to be drifting inside himself...so unaware of everything...I scream silent screams...I've had no existence without him...I don't know how to do this....I  sit beside him, lay beside him, touch his body, caress him, tend to him, ...but only ocassionally do I know that he is there...when he squeezes my hand in response ....I want more than his body to care for....I miss his voice...He's so compliant now...I miss his stubborness..
I want him back..........

oh damn it! That was all about ME...what about him...I dare not consider too deeply how he must feel...no control. on his life...nothing to break the endless days and nights...is it AM or PM he asks....is this Friday?....I hear his heavy breathing through the monitor as I sit here ...my heart breaks and many tears fall but offer no comfort....
How can everything else go on as usual?...cabins are being built, football games are being played...blogs are being written....meaningless birthdays come and go...it all seems so unimportant now..... His eyes are cloudy and oft times a look of confusion on his face...He speaks only when he needs water to try and clean his mouth, or when he needs the bathroom, or when he needs cover...too weak to reach down and cover himself..yet strong enough yesterday to get into his wheelchair and be taken outside for a few minuets...just a few brief minuets of resisting his illness....
I don't want to live in that cabin alone...it is HIS cabin...

I read of others loss of their young children and oh, how that must shatter their life and will always be a part of it....and still others say, "Well, he is 80 years old, he's had a full life...how blessed he was...we don't live forever"...All of that is true but I wonder if those who think that way have  ever loved someone for 60 years...had them be a part of themself...and then expect to go on living without that part...it's such an empty, hopeless feeling.

I speak as tho he were already gone...in a way he is...maybe this is part of letting go...I WILL NEVER LET GO...

"The body from spirit doth slowly unwind,
until we are pure spirit in the end."

'Sorry children, I know these words are painful...'don't know why I feel compelled to write them...I realize how difficult this is for you, especially you who are not able to be here with us.
This is not Gods doing...good things are from God...you five children are from God, our love for each other is from God...this is from Satan...this is from evil...there is much good in this world but there is also much evil...our lives are touched by both.

2008 vs. 2009..what cancer can do

And the winner is !!!!

 Dec 2008

Dec 2009

you be the judge....

A repost...cause I'm still mad..not the greatest post for the Christmas season...buy hey, it's my blog!

Tuesday, June 30, 2009


I'm mad as hell !!##!*!!

Cancer cannot cripple love...shatter hope...corrode faith...kill friendship...suppress memories...invade the soul...steal eternal life...
BUT STILL..

I'm mad as hell...
Chemotherapy and radiation ravage the body...robbing it of all familiar and treasured things.. the smile gone from his face is replaced with a furrowed brow...his eyes opened only occasionally, and then just wide enough to observe cloudiness and pain...his evening snoring has now become quiet moaning or mutterings...interrupted by choking because he's unable to swallow..

I'm mad as hell!!

The hours he loved to spend just sitting, studying the Bible.. contemplating with a free mind directed toward God...his heart filled with thanksgiving to Him for all that He has blessed us with...now his days and nights are spent lying in bed, striving to escape from his present condition through drug-induced sleep.

I'm mad as hell...

His treatments have robbed him of so much...
He can no longer drive, take his walks, swallow, talk without discomfort..(so he doesn't talk)...... He can no longer view his favorite Fox Cable News, Bill O'Riley, Texas Longhorn sports events...attend church on Sundays...share time with his buddies at PBC on Saturday morning prayer times and Monday evening bible study...attend the monthly Care Group meetings with our Christian friends, sharing a meal and just spending time learning to love each other....

I'm mad as hell!!!

We no longer drive over to Braums for a dip of chocolate chip ice cream, or go to Del's for a mushroom burger and home-made root beer,or enjoy a nice lunch at LaMadalines', or meet up with our boys and their kids at Keller's Drive In for a Sunday night burger and Corona...or take in an occasionally movie...the man who always attempted a conversation with whomever he came in contact with..who "could talk to anybody", now wants to talk to nobody..

I'm mad as hell!!

It was a simple life...but it was OUR life..

All this..and maybe

JUST MAYBE

it will destroy the cancer...no guarentees though...

I'm mad as hell !!!

like Sundays past

I don't know if it was because he was sick and tired of laying on the couch all day and never going anywhere except to see his doctors, or if he really felt like getting out,..but ...Eddie drove us over to Canton to Laura's today...about a 70 mile drive...We have not been able to go over for a visit since  before he got sick... 6 months. It rained all day and was very cold but he was determined....and I'm glad he was...it was good for him to do something different.

We were up a couple of times last night and at 7am I fed him .....then we both went to sleep again and didn't get up 'til 11 am...he said then that he wanted to get out of the house today..
Laura had been over here yesterday...spent the day...she and I ran errands  while Herk stayed with his dad..A little teary-eyed she shared with me how hard it was for us to be leaving...the fact that her mother and father might never be in her home again. She's happy for us and feels it will be better for us to be in Alabama, and she's glad for  Barbara to have us close  now.... for the last  21 years we've been here in Texas and even before that, ever since Barbara married, she has  lived in Alabama and we in Chicago and Dallas.
  that said, when Bob said that he wanted to go out today I suggested we go to Laura's if he was up to it.

We got there around 2pm...
 enjoyed a nice warm fire...some home-made chicken pot pie...and a visit with our grandchildren

We arived back home at 5pm...both a bit tired...he's over in his bed snoring and I'm about to join him.

what I learned today....... :(

Bob had a dysphagia (inability to swallow) evaluation test today...he failed the test....I wasn't surprised but I was hopeful that it would be different....They brought a mobil unit out to the apt. ...the driver was accompanied  by a doctor and a speech therapist.
 ...we went outside into the unit, he sipped a tiny bit of barium and they filmed as he swallowed ....we were able to view  his throat muscles, pharynx. esophagus,..even his teeth...and they gave us a dvd of it ..


....swallowing  triggers a reflex that passes the food through the pharynx (the canal that connects the mouth with the esophagus). During this stage,  the throat muscles tighten to raise the larynx (voice box)...that motion closes off the airway, breathing stops momentairly to prevent food or liquid from entering the lungs so that what you swallow goes into the esophagus to the stomach.....

.....his throat muscles moved only the slightest bit  and his larynx did not lift and close over his airway enough to protect his airway...anything that he swallowed would go partially into his lungs.  
This could likely be a permanant situation..however,

most unused muscles atrophy over time but can possibly strengthen with continual exercise ..his would need to be  daily therapy (two or even three times a day) for several months...(he's been doing this with   his personal therapist,Lorie,  twice a week for about the last month....)

or the damage from the radiation could be permanent...may God grant that this not be so...never to be able to eat again...I'm overwhelmed.

wait...there's more.

He is constantly plagued with coughing  ...he is unable to swallow his own saliva and the secretions that naturally accumulate in ones mouth...these things trickly down into his throat obstructing his windpipe causing  him to choke and cough and clear his throat and mouth by spitting....awake or asleep...no reprieve.. This "exercise" is one of the things he suffers with that keeps him drained of energy.....and this too for the remainder of his life?  I'm beyond overwhelmed....