Posts filed under ‘Doctor/Physician’

September 3rd-NO LIMITS-Chapter20-Chris Ritchey

 

NO LIMITS

Forward: https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

Chapter One :https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

Chapter Two:https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-

Chapter Three: https://thatwoman.wordpress.com/2020/04/03/april-3rd-no-limits-chapt-3-chris-ritchey/

Chapter Four: https://thatwoman.wordpress.com/2020/05/03/no-limits-chapter-4-chris-ritchey/

Chapter Five: https://thatwoman.wordpress.com/2020/06/03/june-3rd-no-limits-chapter-5-chris-ritchey/

Chapter Six: https://thatwoman.wordpress.com/2020/07/03/july-3rd-no-limits-chapter-6-chris-ritchey/

Chapter Seven: https://thatwoman.wordpress.com/2020/08/03/august-3rd-no-limits-chapter7-chris-ritchey/

Chapter Eight: https://thatwoman.wordpress.com/2020/09/03/sept-3rd-no-limits-chapter-8-chris-ritchey/

Chapter Nine: https://thatwoman.wordpress.com/2020/10/03/oct-3rd-no-limits-chapter-9-chris-ritchey/

Chapter Ten: NO LIMITS- Nov 3rd- Chapter 10- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Eleven: NO LIMITS-Dec. 3rd- Chris Ritchey- Chapter 11 | That Woman’s Weblog (wordpress.com)

Chapter Twelve: NO LIMITS-Jan 3rd- Chris Ritchey- Chapter 12 | That Woman’s Weblog (wordpress.com)

Chapter Thirteen : NO LIMITS- FEB 3rd- Chris Ritchey- Chapter 13 | That Woman’s Weblog (wordpress.com)

Chapter Fourteen: March 3rd, NO LIMITS, Chapter 14- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Fifteen: April 3rd- No Limits- Chapter 15- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Sixteen: May 3rd – No Limits- Chapter 16- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Seventeen: June 3rd-No Limits-Chris Ritchey-Chapter 17 | That Woman’s Weblog (wordpress.com)

Chapter Eighteen: July 3rd – NO LIMITS- Chapter 18-Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Nineteen: https://thatwoman.wordpress.com/2021/08/03/august-3rd-no-limits-chapter-19-chris-ritchey/

Houston Continued:

I have never felt so out of my  depth. All my  life I  have been decisive , could see my  way  to  a solution or know who  to  reach out to  in order to  find a solution. Yet here I  was in a strange city , scared to  death , totally  alone . having to  bury  my  fears, worried I would say  or do  something that would hurt my  son or take away  his thread of hope. I could not let him see my  doubts , my worries.

I would take my  phone  out to  the pool area and call Nikki , my  support , she would get me back on track but I really  could never even be totally  truthful with  her . A young mother with  a little baby , she too ,scared of the future without Chris.

Watching was the hardest part of those weeks in Houston, feeling so  damned inadequate. I had promised him the day  he was born that I  would never let any  harm come to him and I  would always protect him and here I  was totally  useless and not being able to  keep  that promise .

You  do  the deals  with  an unknown powerful being,

take me , let him be cured 

and knowing somehow you  are wasting your time, but you  feel  you  have to  try  anything to  save him. You  spend hours on the internet  researching looking for a glimmer of hope, knowing this  trial is the last chance. If I  had been told,

in order to  save him they  would need every  drop  of my  blood

I would have gladly  died for him. There was never any  choice given to  me.

It is a rollercoaster  ride, lost in a maze of emotions  abysmally  alone.  Despair finds you , weakens you takes you  to  regions of a self made hell

Depths of Despair – artwork Chris Ritchey

The keeping up  a positive face was probably  the most draining for him as well as me.  Chris was still filling out the report forms , everything noted as manageble. He never mentioned in the notes that every  night he couldn’t sleep  for the pain and would run the hottest of baths , sometimes 8 or 9 almost burning his skin to get some relief. He would surround himself with  hot water bottles filled with  boiling water. I pretended not to  notice  but it was hard when the electric kettle would disappear into  his bedroom and the the wet towels would be hung of the shower rail.

I would close the bathroom door and check  the bottles of pain pills  they  were going down at an alarming rate. It was so hard  and finally  I  understood Chris’ artwork to  describe the word HARD , it did truly feel to  me  that I  was rushing headlong into  an impenetrable hell , impossible to  pass through.  I would shake these premonitions as just down to  being  emotionally  exhausted.

Artwork Chris Ritchey— HARD

I so  wanted to  hold and cuddle my  son  as I  did when he was little. But he was a grown man and although  I  would get the occasional pat on the head as he would walk by I knew the last thing he needed was for me to show weakness.

Crying time was when he would go  to  the shooting range or to  Cabelas . I  knew I  would have a couple of hours to  myself . I would, on occasion, take one of his shirts and bury  my  face in the folds just to  be near him and let the tears flow, somehow in that act to  release the pain. I washed a lot of shirts doing that.

We did try normalcy  , some sightseeing but always I  was watching to  see how he was dealing with  the energy  being used  . I waited –  hoping the news would be good at the end of the trial and what he was putting himself through  would all be worth it.

Waiting , it seemed that is all I  had been doing for 13 months. Waiting in doctors and hospital waiting rooms. The chairs in those rooms , no  matter the hospital or city  or state, were clones of one another.

People watching , wondering what the story  was of the man waiting behind the frosted glass , he also  waiting  for good news or bad, feeling that connection with  someone who briefly  passed through  in a moment, never acknowledging  each other not  speaking – but connected.

Waiting whilst announcements were made and the sound of rubbers soles squeaking on tiled floors, the wheels of hospital carts as they rolled down hallways announcing more meds.  Waiting , not daring to  breathe as results from tests were coming and all the time wanting to  run away  far away  but knowing there was no  running from this obscene disease …..

if cancer had a face

to  be continued

 

September 3, 2021 at 12:45 pm 2 comments

June 3rd-No Limits-Chris Ritchey-Chapter 17

Forward: https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

Chapter One :https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

Chapter Two:https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-

Chapter Three: https://thatwoman.wordpress.com/2020/04/03/april-3rd-no-limits-chapt-3-chris-ritchey/

Chapter Four: https://thatwoman.wordpress.com/2020/05/03/no-limits-chapter-4-chris-ritchey/

Chapter Five: https://thatwoman.wordpress.com/2020/06/03/june-3rd-no-limits-chapter-5-chris-ritchey/

Chapter Six: https://thatwoman.wordpress.com/2020/07/03/july-3rd-no-limits-chapter-6-chris-ritchey/

Chapter Seven: https://thatwoman.wordpress.com/2020/08/03/august-3rd-no-limits-chapter7-chris-ritchey/

Chapter Eight: https://thatwoman.wordpress.com/2020/09/03/sept-3rd-no-limits-chapter-8-chris-ritchey/

Chapter Nine: https://thatwoman.wordpress.com/2020/10/03/oct-3rd-no-limits-chapter-9-chris-ritchey/

Chapter Ten: NO LIMITS- Nov 3rd- Chapter 10- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Eleven: NO LIMITS-Dec. 3rd- Chris Ritchey- Chapter 11 | That Woman’s Weblog (wordpress.com)

Chapter Twelve: NO LIMITS-Jan 3rd- Chris Ritchey- Chapter 12 | That Woman’s Weblog (wordpress.com)

Chapter Thirteen : NO LIMITS- FEB 3rd- Chris Ritchey- Chapter 13 | That Woman’s Weblog (wordpress.com)

Chapter Fourteen: March 3rd, NO LIMITS, Chapter 14- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Fifteen: April 3rd- No Limits- Chapter 15- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Sixteen: May 3rd – No Limits- Chapter 16- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Houston Days and Nights- continued

I can’t begin to  put into  words how stressful it was for both of us , those days and nights. Chris and myself  “pretending everything was normal “ skirting around issues we both  knew were uppermost on our minds.  Wanting to  talk but not wanting to say  out loud our fears, maybe that way  we could hope a little longer.

Not everything was rosy , mother and son facing a terrible unknown locked together in a small apartment.  .Chris tired and in pain. I  knew it wasn’t me he wanted with  him. I  found a note that Angela had left behind in a desk drawer, Chris  was hurt and disappointed she was leaving Texas and it was me that would be with  him.

I knew my presence in Texas only confirmed that he was dying of Cancer, I was a constant reminder that he needed a care giver ( although you felt he could manage on his own to deal with side effects of a trial drug and Cancer) he would’ve preferred that it would have been his wife, not his mother to be with him.

photo Angela by Chris Ritchey

As a wife, I couldn’t have left my husband knowing that he was living under a death sentence and had been since August 29th -but that was Angela’s choice.

I could never understand Angela’s way  of thinking, but tried to  make allowances  , she too  was dealing with  a terrible situation in her young married life. I couldn’t believe that even during this awful, hopeful , chaotic time  she would still try  to  manipulate a situation and lie as she had done  with Nikki  and Chris  and the engagement ring episode.

Chapter  Three :

March 3rd – NO LIMITS- Chapt 2 – Chris Ritchey | That Woman’s Weblog (wordpress.com)

October 8th:  One month  in and the façade came crashing down, we were due to  come back  to  Cleveland for a few days . I made arrangements to  still keep  the apartment  as they  were so  difficult to  find. To  me, it was worth  paying for it to  be empty  rather than going through  the hassle of  moving and or finding something else.

This one particular day  we did have that heart to  heart that horrible “truth  revealing ” argument  that shouldn’t have happened!

In  the hours before that argument came to a head Chris and I had gone to get his prescriptions- he was tired and in a lot of pain- I said maybe I could pop into Borders ( which was across the way)

I would like to buy the new Dan Brown novel-

I could see he was impatient to get back so I didn’t push it. His mood was dour and his eyes narrowed and lips ( always a sign of anger) were tight. He had been on his cell phone to his wife, Angela, as we waited for his prescriptions. He drove back to the apartment in utter silence . He immediately went out by the pool in the apartment – I could see him sitting not moving. I decided he needed space  -then Nikki called and said that Chris had hung up on her and was very angry.

“but leave him alone mum” he doesn’t want to talk.

I knew my son. I knew whatever it was would fester until he exploded – he was so much like me.

I went to the pool- he said

“I don’t want to talk”

“You don’t have to -you can listen- I need to talk to you”

I was never a crier before Hodgkin’s I was a fighter, a do-er – this blubbering fool that I have become is down to the helplessness and hopelessness that took away happiness. Chris never knew me as a “crier” before his illness – so as the tears fell he sat silently as I told him

Chris, being a mother of a son is so much harder than you can imagine – I have tried so hard to give you and Angela the space you both need in this terrible time. I KNOW Chris, that you are feeling that you have no control over what is happening to your body and your life- I know you need some control , another reason why I have tried so hard to stand aside- you didn’t need me in the mix as well -But I am going to honestly tell you now -if this had been Nikki and not you I would have handled things so much differently – just as Nikki is my child I would not have sat back and taken a back seat to decisions as I have with you and Angela.

You see when a son marries he brings into his life another woman- it is very difficult in the best of circumstances for a mother to sit back and watch decisions being made that in some cases I did not agree with in a normal situation- this terrible situation we find ourselves all thrust into makes it doubly hard. But I have deferred to you both and to her “medical expertise” with this obscenity of Hodgkin’s that has engulfed us. It has been one of the hardest things in the world for me not to interfere or to put in my two cents. There have been times Chris when I have doubted my own abilities and lost confidence in myself – I have gone against my own gut feelings and yet there is a voice that tells me to still be protective of you .

I have tried to give you both your space – to be there when needed and to shut up for your sake when I was totally against some decisions. I have tried for your sake because I love you so much I would do anything and sacrifice anything for your health and happiness.

I don’t know the reason why you are so angry with Nikki and I but you have to know neither of us would intentionally do anything to hurt you . We have tried to put you first in all our thinking – We love you always have and always will. “


With that I left the poolside and went back into the apartment. Chris followed a few minutes later and then it all came out ( as I knew it would) an argument and accusations the finding out of lies that were told

“we had excluded Angela in decision-making as to driving the truck back to Texas.”

He wanted to drive his truck back . I told Angela  in an email ( which I have ) that it wasn’t a good idea him driving, he was having difficulty due to the side effects of SGN35 and I thought she should know since obviously you had been in Ohio since Sept 10th and hadn’t see the problems he was having even driving to Target let alone 1,700 miles.

I never received any  response from Angela to  my  emails ( which  I  still have)

Chris was furious with  me and  Nikki

“You didn’t include Angela”

Me:

“What are you talking about – I included Angela”

CHRIS No you didn’t !

Me.

Would you like to see the emails?

CHRIS: “

Yes! I would”

Me.

So you are calling me a liar ?

CHRIS:

” Don’t give me that F…. shit if I want to see the email then I must be calling you a liar. There aren’t any emails Angela doesn’t lie!

I then pulled up the emails…. all of them sent to Angela

ME:

Look at the dates and times Chris … now tell me I’M the one that lied…… she says here she wants to talk to you about it did she?

CHRIS:

Well she has been busy

ME:

she talks to you 4 or 5 times a day she couldn’t mention it but she could let you believe that Nikki and I didn’t include her?

He broke down  cried….. my  wonderful strong brave son reduced to  tears not by  cancer that night but by  lies and manipulation

She, the loving wife and bride  did that to him by trying to lie by omission … not me ….I held him and he said:

“did you ever think that I want to see something of the country if I am going to be dead in two years.”

My heart broke for him – I cried and we held on tight to each other and I said

Chris none of us know when we will die, the way you are driving lately we could end up dead on the way to hospital tomorrow ….

he laughed a little and I said:

Chris, I know the SGN35 is working, the lump on your neck isn’t visible and you haven’t coughed since Sept 21st.

That  night he went and checked the lumps on his neck for the first time in weeks.  Chris called Nikki back, she and Jim had talked and Jim would take time off work and drive back to  Houston with  Chris in his truck . He told Nikki  he wasn’t really  angry  with  her, just at the hopelessness and helplessness he was feeling. Once again Chris and sister reached out beyond the miles to  each other.

After talking to Nikki he said he wanted to take a drive, we still had the hire car. He left-  I wasn’t sure where and I was worried- he was in so much pain and on so many pills –

A little while later he came back ….. he walked in patted me on the head as a I sat in the chair and handed me a book as he walked to the bedroom – The Lost Symbol by  Dan Brown…………

June 3, 2021 at 1:06 pm 6 comments

May 3rd – No Limits- Chapter 16- Chris Ritchey

 

Forward: https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

Chapter One :https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

Chapter Two:https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-

Chapter Three: https://thatwoman.wordpress.com/2020/04/03/april-3rd-no-limits-chapt-3-chris-ritchey/

Chapter Four: https://thatwoman.wordpress.com/2020/05/03/no-limits-chapter-4-chris-ritchey/

Chapter Five: https://thatwoman.wordpress.com/2020/06/03/june-3rd-no-limits-chapter-5-chris-ritchey/

Chapter Six: https://thatwoman.wordpress.com/2020/07/03/july-3rd-no-limits-chapter-6-chris-ritchey/

Chapter Seven: https://thatwoman.wordpress.com/2020/08/03/august-3rd-no-limits-chapter7-chris-ritchey/

Chapter Eight: https://thatwoman.wordpress.com/2020/09/03/sept-3rd-no-limits-chapter-8-chris-ritchey/

Chapter Nine: https://thatwoman.wordpress.com/2020/10/03/oct-3rd-no-limits-chapter-9-chris-ritchey/

Chapter Ten: NO LIMITS- Nov 3rd- Chapter 10- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Eleven: NO LIMITS-Dec. 3rd- Chris Ritchey- Chapter 11 | That Woman’s Weblog (wordpress.com)

Chapter Twelve: NO LIMITS-Jan 3rd- Chris Ritchey- Chapter 12 | That Woman’s Weblog (wordpress.com)

Chapter Thirteen : NO LIMITS- FEB 3rd- Chris Ritchey- Chapter 13 | That Woman’s Weblog (wordpress.com)

Chapter Fourteen: March 3rd, NO LIMITS, Chapter 14- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Fifteen: April 3rd- No Limits- Chapter 15- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Houston Days and Nights- continued

I haven’t the words to eloquently or adequately   explain the emotions that crash  in and out of your being as you  watch your child battle to  stay  alive. This enemy, came to  conquer , not with guns , bombs or knives it was insidious in its will to  win turning the very  body  of  its victim  against itself. Cells that were made large so  the pumps of the body (lymph nodes) plug  and distort. It circulated through  the life giving blood stream through  the lungs causing coughing that wracked the very  body  trying to deal with  the attacks.  Cancer in all its forms is and obscenity .

I tried so  hard to  keep  cheerful, what 29 year old wants to  be with  his mother. I  know he wanted Angela there knowing the trial was his last hope for a cure or at least remission. I know he wanted to  spend what time he had left with  her . I know I  was the best of a bad deal . I argued with  myself, stop  watching his every move, deliberately  giving him space, taking myself out to  the  pool side to  read, even though  I  was petrified of the little gecko  things running about the pergolas and tables, I  didn’t scream when  they  ran across my  foot or thought I was a roadway  across a chair.

Chris, would spend time going to  the rifle range or to Cabelas.  We tried to  see some of the area when we could and when he felt up to  it.  JD  and Karen, had been out of town for a bit. Chris, after one of the infusions  of SGN 35 could barely  speak the the next day  but when JD called he put strength into  his voice so  JD would not realize how poorly  he was feeling.

Tears welled up  in my  eyes and I  had to  go  out into  the lawn area and have a silent cry  by  myself. Only  I wasn’t by  myself one of the other residents I had noticed  sitting by  the pool, looking as I must look, was there.  She looked up  and me as I was not winning the battle of holding in the tears and noticed she too was crying. She reached up to  hold my  hand  and I  sat down and there we sat for a long time. Two  humans knowing nothing about each other, never speaking  sharing  the impact of cancer. I learned she too, was caring for her  grown daughter as the husband had to  stay  in Indiana for his job and children.  Her daughter was also  on a trial at MD Anderson and a last hope.

 

Hands – Touching- Hands – art work Christopher Ritchey

On the good days we toured Houston. He had wanted to  go  horse back riding. I hadn’t been on a horse in 20 years ( I was then  a lot thinner and in better shape)  and Chris  hadn’t ridden since he was a little one. I made arrangements for the following day. Of course,  that night poured with  rain and  a warm front came  dripping over Houston. I  wrote on my  blog at the time :

NOOOOOO!!! this isn’t a picture of the horse after I rode it. Whew! 90 degrees yesterday after a rain that could’ve floated a boat. My foray into the wild west “avec” plastic helmet. I realize that horse rentals have to protect their clients but you tend to lose heat through your head … just ask a politician 🙂 and when it is covered with plastic and foam OMG!!!! Anyway 2 hours later after riding through swamp and shrub and bush I now remember why cowboys are bowlegged. 

Chris, had become very  interested in life in Texas , so  different from Lorain , Ohio.  One of our days ( again in that heat) was spent at George Ranch Historical Park. It was fascinating seeing the 1830’s cabin and farm  the humble beginnings  to  the 1930’s house “George Cattle Complex” . Of course then there was that oil that helped

“The discovery of oil on the Ranch in the 1920s changed the fortunes of the family and the community forever. The George’s son and only child died while just a toddler and their beloved cousin and presumed heir Mary died tragically when she was a young woman. With no living heirs and a considerable estate, the Georges established The George Foundation to ensure that their wealth would continue to benefit communities across the county into the foreseeable future. This charitable Foundation still exists and gives back today and helps bring you the story of the remarkable family who loved, grieved, rejoiced and lived on this enduring stretch of Texas prairie.”

It was a good day  and Chris was enthusiastic. I  was once again feeling like I would die from the humidity  and heat at any moment but we laughed  and enjoyed a day  without the mention of Doctors or cancer . I would have put up with  heat, humidity  and wading across  the little river filled with  alligators just to  see him smile and laugh .

Mothers and Fathers who  are losing their child will do  the deal with  God, the stars , fate  whatever they  believe, ”

“take me instead  let my  son/ daughter have life and laughter and old age…………”

To  be continued………

 

May 3, 2021 at 1:53 pm 3 comments

NO LIMITS- FEB 3rd- Chris Ritchey- Chapter 13

ED NOTE: These next chapters are among the most difficult to  write.  I  have to  “emotionally” pace myself so  I  can get through  the memories both mentally  and physically.  . Those who have lost a son or daughter  know that for the rest of your life you  are locked into  the “time of loss”. The days, week, months and years  go  by  but you  are held  within the  grasp  of those last moments and times of your child’s leaving.   You  see,   the part of you  that was theirs dies too, you  are not the same person you  were and you  never will be again.  Your body  adjusts, the brain tells you don’t go there, you  learn to  dodge the known triggers , the brain tries to  protect, to  stop  the gutting grief from destroying what is left of you . Your mind goes into  “protect mode” however, when revisiting  those times intentionally  in order to  tell the story  you  are a raw  and and the wounds open  as the days of death once again are relived..   

No  Limits – The Book

Forward: https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

Chapter One :https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

Chapter Two:https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-

Chapter Three: https://thatwoman.wordpress.com/2020/04/03/april-3rd-no-limits-chapt-3-chris-ritchey/

Chapter Four: https://thatwoman.wordpress.com/2020/05/03/no-limits-chapter-4-chris-ritchey/

Chapter Five: https://thatwoman.wordpress.com/2020/06/03/june-3rd-no-limits-chapter-5-chris-ritchey/

Chapter Six: https://thatwoman.wordpress.com/2020/07/03/july-3rd-no-limits-chapter-6-chris-ritchey/

Chapter Seven: https://thatwoman.wordpress.com/2020/08/03/august-3rd-no-limits-chapter7-chris-ritchey/

Chapter Eight: https://thatwoman.wordpress.com/2020/09/03/sept-3rd-no-limits-chapter-8-chris-ritchey/

Chapter Nine: https://thatwoman.wordpress.com/2020/10/03/oct-3rd-no-limits-chapter-9-chris-ritchey/

Chapter Ten: NO LIMITS- Nov 3rd- Chapter 10- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Eleven: NO LIMITS-Dec. 3rd- Chris Ritchey- Chapter 11 | That Woman’s Weblog (wordpress.com)

Chapter Twelve: NO LIMITS-Jan 3rd- Chris Ritchey- Chapter 12 | That Woman’s Weblog (wordpress.com)

Houston Days and Nights

I  watched as Chris and Angela went through  “security” at the Cleveland Airport. I hoped he would be able to  get on the plane. H1NI ( swine flu) had reared its head and the airlines were on the lookout for anyone displaying symptoms . Since the Hodgkin’s tumors were making their presence known once more in his body  he developed a cough  as the lungs tried to  expel the foreign body.

“Try  not to  cough  Chris , that would be all we needed to  be banned from the flight”

It had been a whirlwind of action since the phone call that morning  and now I stood in the lobby  of the airport drained, hopeful once again and yet wondering WHY?

Why  was life being so  cruel?

I had booked  Angela and Chris into  the Marriot Hotel near  MD Anderson Cancer Center  for  three nights. I wasn’t sure how long the tests and interviews would take . I got a phone call from Chris that night to  say  they  had arrived and were having room service  ( was that OK? ) I told him:

I didn’t care they  had my  credit card information whatever makes life easier for you  darling

We aren’t wealthy  but I would have sold my soul for him and I would worry  about the debts later.

The next day  I did not leave the phone, finally  Angela rang to  say  that although  MD Anderson had also  closed the trials for SGN 35  they  were going to make a place for Chris on that trial as he fit the profile  and he was going through  a barrage of tests.

Cancer Clinical Trials | MD Anderson Cancer Center

Relief flooded back filling the void of fear once again. Then more good news, trials aren’t typically  paid for by Health  Insurance , again I would have sold my  house if need be, but Angela  being an employee of the Cleveland Clinic  insurance did cover the trial even though  Chris was not at their facility  because he had been denied a place in the Cleveland Clinic Trial.  I truly  felt things  may be falling our way.

After the tests they  concurred Chris was right for the trial. By  now we were at the start of the Labor Day  weekend . Chris was set for more tests the following week  and all being well the first infusion of SGN 35 on September 11th. I  had contacted the family  services people at MD Anderson  to  see about long term lodging. The hotel would be  far to  expensive  over $230 per night  at that time.  I needed to  get them somewhere comfortable and close.

The offices  emailed me a list of about 50 hotels and apartments all of varying quality  and prices.  I had no  clue about where anything was in relationship  to  the Cancer Center , nor did I  know anything at all about Houston.  I gave a short list to  Angela to  see if she could find out any  more information.

Chris called that evening , the tests went well and acquaintances of both  the Lombardi’s and actually   of mine had interceded by  phoning  friends  with  whom they  had been college roommates  who  lived in Houston.  JD and Karen , these people were wonderful they  took Chris and Angela under their protective wing  and invited them to  their ranch  for the long weekend.  I was thrilled , some normalcy  for once. Chris was so  happy  I could have cried.

I found out that  MD Anderson was huge bringing in patients from all over the world  and the places available for short stay/ long stay  accommodation  were few and far between. I reserved a couple and asked Angela to check up on them for suitability . I lost two   because “they  were going to  look after the weekend”

I couldn’t seem to make Angela  understand  this was probably  NOT going to  be an option. I received a call from the one Houston Apartment  Corporate Housing. I had reserved a one bedroom apartment but they  had someone else wanting it so  I  took it sight unseen. It was the Esplanade.

Angela  was not very  happy  I  had done that but I  said

“you  have to  have somewhere to stay and Chris needs to be where he can rest. I  have taken care of all the finances, all you  have to  do  is bring your cases  and get some food shopping  “

It had been decided  that Angela would stay  until the night before his first infusion on the 11th   but she  would return to  Cleveland on the 10th.  I didn’t know what to  say , I realized Angela would need to  come back  to  sort out work and necessary  details but I  thought she would take time off to  be be with  Chris. After all this was a “trial” he was weaker than ever with  the cancer coursing through  his body, surely  she didn’t intend for him to  stay  there by  himself.

Angela said:“He will be fine…. there is a kitchen and he can order in pizza and JD and Karen had lent him a truck……he has to  take ownership  of his illness”

I was incredulous, like it or not my  son was facing death  and an unknown treatment. Nikki  said upon hearing this :

“mum you  have to  go  and be with  Chris, he can’t handle doing this on his own” ” Who  will see to  it that he eats, that he is OK  , you  know how hard it was on him with  the chemo….call an ambulance….”

I could see Nikki  was also so worried so I left for Houston on September 12th, as Chris  refused to  let me fly  on September 11th.  I told him I would find my  own way  from the airport as he needed to  rest after the infusion of the day  before.

The night before I  left Sue Lombardi  and Tim arrived at my  front door with  a suitcase of clothes and essentials  that Chris had asked  Angela to  get to  me as he went to  Houston with just a small bag .

Chris’s dog, Misty, was a loopy  friendly   bundle of happy, she loved everyone, we always joked if an intruder came to  the house  she would lick them to  death

So  I was shocked when Sue walked into  the living room and Misty went mental, growling, teeth  barred and barking  definitely  in a protective mode. Neither  my  husband  or I  had ever seen her demonstrate such  behavior , she would not stop  and it was very  embarrassing. Finally  realizing this was not stopping, my  husband put her outside where she continued to  bark as if the devils from hell were threatening us.

Looking back it may  be because underneath  all the smiles and nicety, nicety syrupy talk Sue was giving off vibes the dog could understand and saw her as a threat . I don’t know but Misty never behaved that way  before or since  or maybe she knew the true character of the woman who  would cause us so  much  pain

To  be continued……

February 3, 2021 at 1:12 pm 3 comments

NO LIMITS-Jan 3rd- Chris Ritchey- Chapter 12

ED NOTE: It has been one year since I  started this journey  of serialization of my   book/posts on my  son’s, Christopher Ritchey, journey.  I had thought, initially,  to  intersperse  the posts as usual with  other posts, pertaining to  life, Lorain, crime and politics. I  have found I  just do not have the energy  and the apathy is all consuming . I have come to  the sad realization what I  think  and my  passions on those subjects just don’t matter and don’t make a bit of difference in the real world.  However, my  journey  with  NO LIMITS continues, as hard as these chapters are to  write  and reliving the journey  of hope and no  hope there is a light at the end of this journey . I  will continue to  tell of our journey with  transparency  and truths.

 

No  Limits – The Book

Forward: https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

Chapter One :https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

Chapter Two:https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-

Chapter Three: https://thatwoman.wordpress.com/2020/04/03/april-3rd-no-limits-chapt-3-chris-ritchey/

Chapter Four: https://thatwoman.wordpress.com/2020/05/03/no-limits-chapter-4-chris-ritchey/

Chapter Five: https://thatwoman.wordpress.com/2020/06/03/june-3rd-no-limits-chapter-5-chris-ritchey/

Chapter Six: https://thatwoman.wordpress.com/2020/07/03/july-3rd-no-limits-chapter-6-chris-ritchey/

Chapter Seven: https://thatwoman.wordpress.com/2020/08/03/august-3rd-no-limits-chapter7-chris-ritchey/

Chapter Eight: https://thatwoman.wordpress.com/2020/09/03/sept-3rd-no-limits-chapter-8-chris-ritchey/

Chapter Nine: https://thatwoman.wordpress.com/2020/10/03/oct-3rd-no-limits-chapter-9-chris-ritchey/

Chapter Ten: NO LIMITS- Nov 3rd- Chapter 10- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Eleven: NO LIMITS-Dec. 3rd- Chris Ritchey- Chapter 11 | That Woman’s Weblog (wordpress.com)

 Chapter 12 : The Trial and Tribulations

The days following  the biopsy  found me sitting by  the phone. I  knew in my  heart of hearts the news was awful but I  clung to  the hope they  could be wrong, it had been known. I  knew it was a foolish  hope but you  grab anything you  can to  hold onto.

Chris came to  stay  with  Nikki that last weekend in August . He was so  pale and quiet. I went over bearing his favourite food . Nikki  told me he had been out in the woods for hours on his four wheeler , alone and not wanting to   talk to  anyone.

We waited, and when he came in I saw my  son trying to  put on a brave face. We all tried to  act normally  I  sat with  him at the kitchen counter , trying to   eat . He was , for my  sake, trying to  force the food down. A friend of my  son-in-law, oblivious to  the situation, came in  talking about the hunting season to  come  and new equipment he was planning to  purchase. It was so  normal and so  damned surreal. Chris left the kitchen , I  knew he was thinking

I  probably  won’t be here for that  season.

I  waited, trying to  swallow my  scream. Nikki  came into  the kitchen  and said ”

Mum, Chris is not good, you  had better come upstairs   

I followed her up  to  the guest room, also  now known as Chris’ room. He was laying on top  of the bed and had broken down, the fear, the hope, the fact he would die crashing down on him and he could no  longer  put on a brave face that day .

I didn’t know what to  say  or do . I felt totally  helpless.  I sat on the bed next to  him and Nikki  was on the other side and we  huddled and cried together. After a while I said , not knowing really  what I  was saying

“The three of us like this, Chris , is probably  Angela’s worst nightmare”

Finally  a weak smile and I said  to  my  son , almost believing it myself

Chris , I  will move heaven and earth  to  find another way  another treatment, even if it means going  to  Germany  or Europe

( I  had heard they  were making strides in Germany with  Refractory Hodgkin’s)

Chris went back out into  the woods riding and I  went home to   get on the computer and research.

I went home worried beyond reason for my  beautiful son. The phone rang it was Angela’s mother Sue Lombardi  wanting to know something inconsequential.

I said Sue:

I can’t even think about that know ( I  can’t even remember what it was ) I have just left Chris and he is in a terrible state.

WELL! she said NOW YOU  KNOW WHAT ANGELA HAS BEEN PUTTING UP WITH . 

I couldn’t believe the sanctimonious,  cold hearted cow!

PUTTING UP WITH , he is dying and scared and turning to  his wife.. don’t talk to  me .. putting up  with ????

she said :

maybe putting up  with  wasn’t the right choice of words .

No!  it wasn’t  I am going now. I  have things to  of more importance to  deal with  

Finally Tuesday   came  when we once again sat in the offices of Dr. Pohlman. Chris sat alone on the side of the room, he had on his aviator glasses and cap was pulled down, as I  looked at my  son , knowing these glasses were his defense  against the emotions he was feeling  being  shown  to us. Nikki  and I  sat together and Angela  drew up  a chair on the opposite wall.

No-one said a word, and Dr. Pohlman of the diamond earing , white framed glasses , starched white coat and Italian leather  shoes entered the room.

I was never keen on him , his bed side manner was decidedly  lacking  , but Chris liked him, why? I  don’t know .  As he sat down he looked at us , looked at the report and said coldly:

“This is bad, very  bad. Your immune system, ( looking at Chris who had not moved but sat like stone) does not recognize the cancer. As your body deals with the good cells it is also  helping the cancer cells .  Another stem cell transplant  , this would be a donor  transplant in the hopes that their immune system  would take over (allogeneic) is a remote possibility , but the insurance probably  would not   OK  it.

Nikki , spoke  ” well  why  can’t we try? “

Pohlman  looked as if he had noticed her for the first time,

“and  you  are  his sister? Well we could test you  as a donor, are you  willing “

“Of course I  am willing I  will do  anything “

Polhman  then continued.

Chris your only  hope for a “cure” ( and yes he said the word “cure” )is to  get on a trial for the drug SGN35 .

I finally  found my  voice,

how  do  we do  that?

Unfortunately, 

he said ( and this was the Tuesday  morning after waiting for days for the results of the biopsy)

We.at the Clinic closed down the admittance to  the trial of SGN 35  we have here on Friday  and there are no  more spaces available. I am not sure there are any  openings  around the country.

I was incredulous , this young man had been treated by  them from the very  beginning they  KNEW the cancer had returned , they  knew he would need options , they  held out the hope again to  only  withdraw it coldly  and clinically. I was so  angry  I  couldn’t  speak. Angela sat there ,

 

For god’s sake I  thought Angela say  something, you  are a resident going to  be a Dr.  a member of the Cleveland Clinic yourself  say  something!!!!!This is your husband  fight for him.

Angela said nothing,  it was Nikki  who  spoke :

You  are the Cleveland Clinic  , the best in the nation, and you  are telling me that Chris has been your patient all this time and you  come in here offering nothing,  just that a trial has closed, why  didn’t you  reserve him a space. You  KNEW what those results were . and all you  can say  is “this is bad , very  bad ” and there is a hope for a cure but not here . Then Where????? Don’t kick him to  the curb, he is not a lab rat……

Chris’ face book page

I am not sure Polhman  was expecting that , I know Angela  looked shocked.  Polhman was the big shot specialist, I  am sure she wasn’t happy  with  Nikki  questioning him.  Polhman turned his hands  outward in a gesture  of  “oh well” said that he would send his assistant to  set up a test for Nikki  and he would have them see if there were any  openings for SGN 35 in other states , but the trials had all closed on the Friday . He had other patients he had to  see.

As they  all walked out I asked what about Europe, Germany , he looked perplexed. He didn’t know  and was that an option. I  said:

anything is an option to  save my  son’s life and walked out.

The rest of the day  found Angela looking into  options, contacting people she had been  in medical school with. Nikki  on the computer  and I called family  in the medical community , who  dealt with  Cancer research . They  put me in touch  with  Chicago  and Columbus trials, talking to  Doctors,   setting up  appointments.

Angela had the best options with  MD  Anderson   Houston Texas . She sent Chris records through   to  a friend who  said they  would get them to  Dr. Younes who  was doing the trial.

Wednesday  morning , Nikki  and I  picked up  Chris from his apartment and we went to  the Clinic for them to  be matched for a allogeneic  transplant. This done we went back to  his apartment, not really  speaking . We stayed for a little while, I  was so  worried about Chris , he had lost hope. I left Nikki  and Chris in the living room and went to  busy  myself making the bed incase he needed to  rest. Nikki  came flying into  the room. Dr. Younes’ PA from MD Anderson  was on the phone and they  had an opening for an appointment  the next day  in Houston.

The next afternoon at two o’clock . OMG!!! the thoughts tumbled and whirled through  my  mind. Take the appointment , call the airlines, Chris call Angela , where is my  credit card , get them on a flight, book a hotel near the hospital , get some money . By  eight o’clock they  were boarding a flight to  Houston….

 

the roller coaster  ride was starting up  again

 

to  be continued……..

 

January 3, 2021 at 2:27 pm 5 comments

NO LIMITS-Dec. 3rd- Chris Ritchey- Chapter 11

No Limits- The book

Forward: https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

Chapter One :https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

Chapter Two:https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-

Chapter Three: https://thatwoman.wordpress.com/2020/04/03/april-3rd-no-limits-chapt-3-chris-ritchey/

Chapter Four: https://thatwoman.wordpress.com/2020/05/03/no-limits-chapter-4-chris-ritchey/

Chapter Five: https://thatwoman.wordpress.com/2020/06/03/june-3rd-no-limits-chapter-5-chris-ritchey/

Chapter Six: https://thatwoman.wordpress.com/2020/07/03/july-3rd-no-limits-chapter-6-chris-ritchey/

Chapter Seven: https://thatwoman.wordpress.com/2020/08/03/august-3rd-no-limits-chapter7-chris-ritchey/

Chapter Eight: https://thatwoman.wordpress.com/2020/09/03/sept-3rd-no-limits-chapter-8-chris-ritchey/

Chapter Nine: https://thatwoman.wordpress.com/2020/10/03/oct-3rd-no-limits-chapter-9-chris-ritchey/

Chapter Ten: NO LIMITS- Nov 3rd- Chapter 10- Chris Ritchey | That Woman’s Weblog (wordpress.com)

 THE HOPING TIME- CHAPTER 11

I was never one for organized religion. My brain always questioning as to the logic of faith. The stories written by men with agendas put in the form of a bible, or a book, tablets, writings, of whatever faith was in vogue, translations based on the politics of the day.  But I prayed to an all-powerful, all knowing being commonly known in my society as God!  I prayed every waking minute silently, and every night alone I prayed out loud. Please God take me not him, let him have his life and happiness. I did the deals parents do when they believe someone magical being   can overturn a fate. I would have sacrificed myself on any alter “He” deemed needed to save my son.

 Almost every church in Lorain had him on their prayer chain. Churches both Catholic and Protestant in England, Scotland, New Zealand Australia and Canada reached out to the heavens in my son’s name. Synagogues, Buddhists and Native Americans joined in with their prayers . I was sent so  many  little bottles of Holy  Water  from Lourdes,   from pilgrimages made on behalf of Chris that I could have opened a market stall.

The thoughts kept going through my  head.

“If there is a God as most seem to  believe and he has no  use for me  and no  reason to  answer my  prayers surely  He can’t ignore the hundreds of people who  are praying for Chris, and especially  his wife  and family  a pillar of the Catholic Church. What about their prayers does my  lack of faith tip  the scale against hundreds of believers?

What about Chris what did he ever do in his young life to  deserve this ? His sister what had she ever done, his father his Nana?  The believers told me God has a plan? Well I don’t like his plan  when the drug dealer who  has raped and caused hell to  his parents  is walking around  procreating  and causing such turmoil why  not him I asked  why  Chris? I did not get an answer and ten years on nothing has changed for the drug dealer except his vehicles.

June turned into  July , I watched as my  son started to  look better from his chemical death. He grew stronger  and I started to  breathe a little  better.  Late July  found him going on a 4 wheeler trip  with the guys.

 

Normalcy  and fun , so  I  thought. Dr. Pohlman  had told him in June he wasn’t  going to  have to  see him until November and he had no  restrictions  as such,  just to  stay  away from people who may be ill  etc.  When Chris came back from that trip  he was obviously  tired  but there was something else going on . I prayed it wasn’t the cancer coming back again.

Chris opened up  to  Nikki  that he thought the lump was coming  back on his neck a compromised lymph node . My  understanding is the cancer cells in the blood are larger than normal cells and so can’t get through and block the system causing the lumps ( tumors) . That of course is the very simplest of explanations , there is so  much  more .

Chris finally having   shared his fears with  Nikki and they  called the staff member in Pohlman’s office  he had been given as a contact. They  basically  said to  keep an eye on it  and he had an appointment moved up until August.

The Doctors decided to  do  a biopsy on August 21st , Chris’ birthday.  I will never be able to  think of his birthday  in the same way  again.

I drove to  the downtown Cleveland Clinic  wanting to  throw up  all the way. I was so  scared I  couldn’t even  think straight.  Chris and Angela were already  there. Nikki  having fed the baby,( she was breast feeding)  was on her way. We sat in silence in the waiting room , Chris, Angela and I  , I  had no  words. Nikki  arrived  looked at her brother and said “Birthday” he smiled . He was taken back to  pre-op  Nikki  and Angela went with  him . I  sat along in a corridor trying not to  fall apart, everything within me  was screaming.

Chris was taken down and we went to  the waiting room only  to  find Angela’s support team. One of them her  grandmother , they  wanted to  get something to  eat so I duly  followed on.  The grandmother who  was nice enough  in her way but in my  opinion  sadly  lacking in forethought  said:

“What a shame, on his birthday  too. Oh isn’t it your birthday  in a couple of days, are you  having a party to  celebrate”

and on she “clacked”. I thought has this woman any idea of what Nikki  and I  are going through. I  sat quietly  through the “meal”, whilst they  ate and  rattled on about this and that, we then went back to  the waiting room.

The big board with  all the operations and who was in surgery and who  was in recovery kept changing. The grandmother true to  form had not finished. Nikki had left me to  go  and express  her milk. As I  sat there visualizing what was happening to  my  son  Grandmother pipes up:

Let’s have a contest , everyone pick a time as to  when Chris goes to  recovery, how much  longer do  you  think  it will be. Angela you  are the Dr. so   you  start.

and they  did . I was by  this time  bringing up  bile in my  mouth, I  could no  longer sit there , was not one of Angela’s support team going to  shut this stupid woman up. Did they  not see how inappropriate this was and how painful?

I got up  and left and went outside crying. Nikki found me  as they  had no  idea where I  had gone. Chris had come through  the surgery  and was in recovery. The  surgeon came out and said it went well and they  were sending the sample for tests. Angela left to  share the news. Nikki  looked at the surgeon and said:

is the cancer back?

He was very  nice and said

 we have to  wait for the results.

Nikki looked at him and said :

You  have done hundreds of these and you  can tell, I know , is the cancer back

He looked at her and just nodded.

Mum, you  can’t go back into  the recovery  room . Chris will take one look at you  and know . You  have to  leave.

and so  I  did . I don’t remember driving home . I was numb , perplexed desperate.

Chris missed my  birthday  but came two  days after with  my  “candles” he always bought me candles since he was a little boy.

April 3rd- The Candle Connection- Chris Ritchey | That Woman’s Weblog (wordpress.com)

 

As soon as Chris was  old enough and earning money, he would  buy me special candles – the trouble was they were always artistic and expensive and I couldn’t bring myself to light them. After one more such gift of candles I couldn’t bear to burn , I told you:

“Chris, these are far too nice to burn – just buy me ones I can feel OK with lighting” .

The next birthday came the “Daisy Candles” and once again I didn’t have the heart to burn them I supposed you had forgotten the request .

I noticed the cellophane around the “Daisy Candles” was definitely yellowing and becoming brittle. My thought was to bring them into the living room where my mum, who loves daisies might get some cheer from them as a symbol of “spring will eventually arrive and with it daisies”

I brought the candles downstairs , took off the wrapper and then saw the instructions-

I realized as I read those words you had listened to me– because the candles were special- the wick would burn for 29-30 hours and when it was done the outside of the candle would still be intact and I could insert tea light candle that would illuminate the outer shell.

 

the thought struck me the candle was yet another symbol- how your life burned with beauty and strength for as many years as those candles had hours (29) and what was left was a mere glimmer of memories that would only burn as long as I lighted the “memory of you” . The “tea light” of the 3rd of every month where once again your life is lived!

The candles , the last he bought me, are still waiting  to  give a light that has been lost to  us.

To be continued………

December 3, 2020 at 3:48 pm 2 comments

Oct. 3rd No Limits Chapter 9 – Chris Ritchey

 

No Limits- The book

Forward: https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

Chapter One :https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

Chapter Two:https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-

Chapter Three: https://thatwoman.wordpress.com/2020/04/03/april-3rd-no-limits-chapt-3-chris-ritchey/

Chapter Four: https://thatwoman.wordpress.com/2020/05/03/no-limits-chapter-4-chris-ritchey/

Chapter Five: https://thatwoman.wordpress.com/2020/06/03/june-3rd-no-limits-chapter-5-chris-ritchey/

Chapter Six: https://thatwoman.wordpress.com/2020/07/03/july-3rd-no-limits-chapter-6-chris-ritchey/

Chapter Seven: https://thatwoman.wordpress.com/2020/08/03/august-3rd-no-limits-chapter7-chris-ritchey/

Chapter Eight: https://thatwoman.wordpress.com/2020/09/03/sept-3rd-no-limits-chapter-8-chris-ritchey/

Double Cell Transplant:

We went to  see  Dr. Brad Pohlman  who  had been involved through  South Pointe with Chris’ initial treatment.

:Brad Pohlman, MD, is Vice Chair of Operations at Cleveland Clinic Taussig Cancer Institute. DrPohlman is a member of the American Society of Hematology, American Society of Clinical Oncology, and American Society for Blood and Marrow Transplantation.https://www.youtube.com/watch?v=sngT_dShxsw

 

So  much  for the 95% cure rate  re Hodgkin’s Lymphoma, Chris was  now diagnosed with   Refractory  Hodgkin’s Lymphoma , the cancer came back very  quickly https://www.webmd.com/cancer/lymphoma/qa/what-is-refractory-or-recurrent-hodgkins-lymphoma

The day, Chris and Angela and I  went to   we went to the Cleveland Clinic and saw the Lymphoma specialist Dr. Brad Pohlman, once again we rode the rails of hope. My son wanted to  do  whatever it took to

get this “crap” out of me, cut it, burn it, kill it, I want to  reach  the age of 50″.

I looked at his face as he said those words and my heart ached for him.

It was suggested that Chris undergo  a Double Stem Cell transplant ,  good results had been seen in a study  out of California . A tandem (double autologous) transplant is a process in which you have two stem cell transplants with your own cells — done about three to six months apart — to increase chances of success.

Basically  this involved removing stem cells  from Chris  through  his blood. The need a certain amount and they  did manage to  get all they  needed in one  removal

https://www.nhs.uk/conditions/stem-cell-transplant/what-happens/

The most common way to harvest stem cells involves temporarily removing blood from the body, separating out the stem cells, and then returning the blood to the body.

To boost the number of stem cells in the blood, medication that stimulates their production will be given for about 4 days beforehand. On the fifth day, a blood test will be carried out to check there are enough circulating stem cells.

If there are enough cells, veins in each arm will be connected by tubes to a cell-separator machine. Blood is removed from one arm and passed through a filter, before being returned to the body through the other arm.

This procedure isn’t painful and is done while you’re awake. It takes around 3 hours and may need to be repeated the next day if not enough cells are removed the first time.”

He then, after harvesting, went through more Chemo therapy  and  in one year from his first chemo  was back in the Cleveland Clinic isolation  etc. to be chemically  killed . There is no  other word for it. We prepared as best we could because of the high risk of infection he was initially  behind a glass window. The side effects of the first transplant  were given to  us :

  • Nausea and vomiting
  • Diarrhea
  • Hair loss
  • Mouth sores or ulcers
  • Infection
  • Bleeding
  • Infertility or sterility
  • Anemia
  • Fatigue
  • Cataracts
  • Organ complications, such as heart, liver or lung failure

As he went through the  first of the stem cell transplants I would go to the hospital every day, he hated the food, refused to eat it. Apparently  the smell of the plastic covers covering the food  and the steam coming off of them  nauseated him. I would cook him lunch and supper, trying to devise a menu which would appeal to the lack of appetite, high calorie content that slipped down easily, dishes he liked from childhood. Then I  would take the dishes to  him. The nutritionist had to  OK what I  cooked, but they  were more nutritious than what they  were trying to  give him so  I was allowed.

Finally  the glass screen came down, he was supposed to  be the hospital that first time around for at least 4 weeks. He experienced most of the side effects.  I still suffer from that place and  that transplant. The nurse warned me they  would be putting his own irradiated and treated cells back into  his body  and the preservative  used would smell like creamed corn and it did. The smell permeated the very  air  for hours. I can no longer smell  creamed corn cooking  or dished out  without being violently  ill both  in mind and body.

I would arrived at 11:30 am, most of the time he would be in the chair by the time I arrived, hooked up to poisons and fluids. I would get clean sheets from the nurse every day and make up his bed.  This was my only way of trying to make him comfortable, with clean sheets and freshly made bed. I would stay whilst he slept, or watched TV. Most of the time I read. I can’t remember one book or title of any book during that time.

I would stay with him in that “cell” because that is what it became for both of us a cancerous prison but with hope the door would be unlocked to a future.  I would heat his supper in the hospital’s “family room” microwave – clean up and come home at 7 to get dishes etc. for the next day and start all over again.

My daughter was at the end of her pregnancy, when Chris was admitted for the first stem cell procedure.  She wasn’t due until at least two  weeks after Chris was due to  be released from the first stem cell transplant ( Autologous) , but once again, somehow I  KNEW  (yet another premonition) , I was going to  be torn would   between hospitals –  I would be travelling between hospitals and the needs of my  two  children.   I was right, Chris was at the end of the first procedure when Nikki went into labor two  weeks early .

I had just crawled, exhausted,  into  bed when my  son in law called to  say  Nikki’s water had broken and to  meet them at the hospital as Nikki  wanted me  with  her when she gave birth.  Even though Chris had been in one hospital being chemically killed he was on the phone to Nikki the whole time talking her through the pain of birth, making her laugh, easing her mind. They were miles apart and yet Chris was there for her as I knew he would be. Chris talked to  her through  the hours of labor, making her laugh, getting her through. They  were always there for each  other

Chris and his sister, Nikki – on the happiest night of her life

Chris said:

hey  at least you  will get out of there in a couple of days  even when I  get out I  will have to  come back….. hang in there … you  can do  this….

 

 

He said to  Nikki  after he heard  it was a baby  boy. let me tell Nana and Dad and he did .  I didn’t see him for 4 days after the birth  as I  was with  Nikki, but his counts came back quickly , quicker than expected and he was released/

Chris came home on April 3rd and met his nephew for the first time, he was amazed at how tiny  Gavin was. Nikki’s house was the first place he came straight from the hospital . Nikki, with  Gavin in her arms   and Chris and held onto  each  other that afternoon ….

To be continued

October 3, 2020 at 12:00 pm 1 comment

Sept. 3rd – No Limits- Chapter 8- Chris Ritchey

 

No Limits- The book

Forward: https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

Chapter One :https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

Chapter Two:https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-

Chapter Three: https://thatwoman.wordpress.com/2020/04/03/april-3rd-no-limits-chapt-3-chris-ritchey/

Chapter Four: https://thatwoman.wordpress.com/2020/05/03/no-limits-chapter-4-chris-ritchey/

Chapter Five: https://thatwoman.wordpress.com/2020/06/03/june-3rd-no-limits-chapter-5-chris-ritchey/

Chapter Six: https://thatwoman.wordpress.com/2020/07/03/july-3rd-no-limits-chapter-6-chris-ritchey/

Chapter Seven: https://thatwoman.wordpress.com/2020/08/03/august-3rd-no-limits-chapter7-chris-ritchey/

After the Wedding- Chapter 8

All during the trip  to  Europe  I  was in a state of panic . I  tried not to  show my  fear, after all Nikki  was pregnant it was a time of celebration, of being with   family  and supposedly   moving forward with   hope  and happiness.  No  matter how I  tried I could not quell the terror that would  shake me awake at night or in unguarded moments transport me to  a dark place.

I wasn’t alone in this thing called premonition, Chris as a little boy had dreams and premonitions too. They faded as he grew or maybe he just didn’t pay attention to them. The day  I brought my  son home from the hospital, I sat gazing at his little flushed faced and those  eyes , new to  the wonder of a world  experienced for the first time and my  mother admiring her new grandson , I  heard myself saying as I  looked at my  miracle and said out-loud as my  mum sat with  me – he will have a sad life! I don’t know what made me say it, I put it down to post-partum nonsense but I was always, in hindsight,  since that utterance tried  to make sure Chris’ life would not be sad. I spoiled him and loved him, laughed with him, enabled him and tried everything I could to protect him.

After Chris had completed his radiation treatments and  we were finally  over our “European Flu” , my  husband and I  were invited to  the newlyweds  apartment  for dinner.  I  hadn’t seen Chris in a couple of weeks he had been travelling out of state for Wyse  Advertising in his position as an Art Director. He had the Meineke Account and they  were shooting a new ad based on Chris’ ideas  which  would be aired on CNN and on the Meineke Bowl December 27th 2008.

 

As I walked into their apartment that evening in November 2008 my  arms full of wine and flowers , my son was sitting in “his” chair – one he had purchased after the wedding- men always have to have “their chair”. I  stopped short  as I  looked at my  son – something was wrong, his eyes, dark circles , pallor I  knew it was not good, but he had been through a lot and was back at work; logical reasoning’s  flooded into my  thought process but I knew   all the while knowing  this wasn’t good. I smiled and said:

I will just give these things to Angela, talk to your dad, I will be back in a second.

I joined Angela in the small kitchen , I  had hoped that my  wariness of her , which I  had felt from the first day  I  was introduced to  her, would have dissipated now they  were married. But no! it hadn’t, there was something that made me uncomfortable around her, something that made me try too hard with her, not be me. I remember thinking:

she is like her mother in so many ways but there has to be something I am not seeing in her that Chris does.

I knew from Chris’s  own lips, Sue Lombardi, the mother in law, was an irritant to him and didn’t gladly suffer her.  There were times my son used the cancer and fatigue as an excuse NOT to go to the Lombardi gatherings, and yet was well enough to join Jim and others at the Irish pub.

Angela, Chris does not look well to me is he OK…. is this the after effects of the treatment?

 

Oh No! she said

he caught cold on the trip  for Wyse – flying you tend to pick up stuff and his immune system is down because of the chemo and radiation. He is on antibiotics from the Dr. at South Pointe. 

I felt somewhat relieved, after all she was now a resident, the hospital staff knew Chris and his situation and so we sat down to dinner. I couldn’t take my eyes off my son, even though I was careful not to let him see I was looking and the quiet fear became a deafening roar.

Thanksgiving 2008 came, Angela was working (supposedly), I  am not sure to  this day  that I  believed that .. I  felt that she wanted to  spend  Thanksgiving with  her family  and Chris with  his, so  they  decided  to  each  go  their  own way and Chris would go  to  Lombardi’s for dessert.

Chris sat as his usual place at the dining room table. I realized I hadn’t really seen Angela but a couple of times, and then only briefly, since they had been married. Chris would come to Nikki’s every weekend but never did Angela stay, she was usually with her family.

 

I had cooked Chris all his favorite dishes that Thanksgiving Day but they largely went untouched. After he left to join Angela at her mother’s, Nikki was worried:

We have to do something, Mum, something is not right with Chris, I don’t care what Angela says he is ill.  .

 

Chris had been scheduled for a PET Scan  but he didn’t want Christmas to  be a blow out  so  he scheduled the scan after Christmas. We had a Christmas , Nikki  and I  treading on  eggshells and swallowing our fears like they  were broken glass.

Angela stayed at her parents and Chris as usual stayed with  Nikki, he had his own room. I went over Christmas morning and Nikki  was very  worried Chris looked dreadful .

Angela  duly  arrived that morning in her pajamas and coat , she called up  to  Chris to

get up  and come on she was waiting  ,

they, the Lombardi  Clan   were all going to  the cemetery  where the little cousin who  had been killed by  the falling tree branch  that September was buried in their  pajamas with  gifts for the grave , opening Christmas stockings  and decorate  a tree.

I heard my  son say

“No  that is  sick I  am not going to  be part of that ,you  go  but I am NOT! 

Angela Ritchey- In red – by Chris Ritchey

Angela’s  face darkened , you  could tell she was angry  and that Chris  had disagreed with  her in front of me and his Nana . I heard her say  as she left the  room

” things will be different next year”

I remember my  mum looking at me and saying:

you  know that girl has a coldness in her I hadn’t realized….

prophetic words indeed.

 

 

 

Dec 27th,  Chris was still at Nikki’s  where  we all tried to  help  him, Angela pretty  much  stayed away sulking   somewhat after the Christmas morning incident, Chris explained . We duly  sat around the  flat screen to  watch the Meineke Bowl  for his ad.

I was sitting on the couch and Chris slowly  started to  slump over his head  on my  lap , like he did when he was a little boy and I  knew…… time was not going to  be kind…..

 

Chris, had the PET Scan January  3rd  went back to Dr. Abraksia , the oncologist, who  originally  over saw the chemo   treatments and eventually the worst fears materialized. Less than 3 months after being pronounced cured of the curable cancer Hodgkin’s Lymphoma morphed into Refractory Hodgkin’s Lymphoma.

Nikki was around 6 months pregnant when Chris called me that January evening with the news the cancer was back. I knew  I had to  tell Nikki  in person – her being pregnant was something unexpected and we were treating her like crystal, as just 4 months before her pregnancy Drs. and specialists told her she would not be able to  have children. But I knew she was pregnant before she did , I  told Chris , he got angry  with  me

Mum, stop  it you  know how much  Nikki wants a baby  that is wrong of you.  

I said ,

well I  just know she is....

and when she came over with  the scan I said

Oh Nikki  I  have to  tell Chris……

there was such  excitement

I knew that Nikki  had to  be told carefully   so  got into  my  car and drove to  her home. It was snowing and icy  and I  nearly  took out a mail box .  Jim answered the door, one look at me and he knew things were bad- I told Nikki what I  knew and she crumpled  in two, just sort of folded up.

her baby  brother

she wanted to  go  to  him right away  but we convinced her otherwise- tomorrow we said .

Nikki and I  went to  Best Buy  on the way   and purchased a small flat screen for Chris’s  bedroom- knowing  he would be shut in that room whilst new treatments were tried. Chris was waiting for us, I started to  unpack the TV  whilst Nikki  and Chris went to  the bedroom- I  heard him say-

Nik- I  did everything they  told me to  do, why is it back it is supposed to  be curable?

Other self by Chris Ritchey

 

My heart was in my mouth- I stayed out in the living room giving Nikki and Chris space” to be”.  It was always the two of them against the world.

And so another medical chapter in the journey of the obscenity of Cancer began. I will write of that journey of stem cell transplants, trials the hope and the horror , the circus that is cancer . However,  this book is not about the journey of medical treatment but that of life and connection.

The Touch- Chris Ritchey

 

September 3, 2020 at 12:31 pm 1 comment

April 3rd- NO LIMITS -Chapt 3- Chris Ritchey

No Limits- The book 

https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-chapt-3-chris-ritchey/

After the engagement announcement and the resulting kerfuffle with  the in laws to  be, I decided I would only  do  what I  was asked , no  suggestions or real involvement with  this wedding. I  could tell it would be walking on egg shells time.

A few days after the ring fiasco  Chris called and said Angela wanted us to  go  to  Beechwood where she had made an appointment to try  on wedding gowns.  It was rather short notice but Nikki  and I,  for the sake of fence mending, agreed to  share in  what should have been a delightful afternoon. In fact it was  except the mother of the bride was not there, aunts and grandmother etc but no  Sue Lombardi.  Angela duly  tried on various gowns and she did look lovely. I suggested that I would purchase the  wedding veil  of her choice.

 

Since I  had to  get back to  a meeting – already planned- Nikki  and I  left. I found out later Sue eventually showed up  as she didn’t want to  take the time off work. Chris called and said Sue was  very upset and

“What would I  have done- would I  have taken the time off? “ 

” Chris you  aren’t pulling me into  that  situation”.. and I  kept quiet. 

 

Chris had  still not recovered his usual good humour , although  he was speaking to  his sister once again. I couldn’t figure out what we had done wrong now. Finally , Nikki told me : Apparently  Chris was beside himself  worrying as to  how he was going to  pay  for the wedding items that Sue and Angela had said  were his obligation. The rehearsal dinner, cars, flowers , liquor for the reception, gifts, photographer, honeymoon  etc. He had spent his savings on that ring and had just been offered a position with Wyse Advertising. Since  his family  had paid for all his college – 5 years at Cleveland Institute of Art he did not have any  student loans and he was trying to  get a loan for this wedding.

I thought to  myself some of those  of those expenses should have been covered by  the Lombardi  family and they  should have realized what a wedding list of over 200 would cost this young man.  but as I  said

I  was going to  keep  my  mouth  shut .

Chris came home from work and I asked him what exactly  was worrying him  and he told me. I told him his father and I  would pay  for all he needed to  pay  for and not to  worry. He balked at the idea  and I  said:

OK let us pay  for it , rather than you  taking out a loan  and you  can pay  it  back to  us over time.

It was decided and life pretty  much  went on, people being young and planning. Although   it wasn’t  all plain sailing as  the bridesmaids and groomsmen were picked and Nikki , Chris’s sister was left out of the plans.  Chris asked her why  she wasn’t going to  look at the bridesmaids dresses  and she informed him

” I  wasn’t asked , I  don’t believe I  am part of the wedding party” ( although  her husband was)

Chris immediately  got on the phone to  Angela

“Nikki  is one of the wedding party  right? ( the reply  of yes if she wants to  be) rather a backhanded invitation ….

Looking back these things faded into  the realm of  really  didn’t matter they  were inconsequential  in the grand scheme of life. Summer passed , autumn and Christmas and then in February  a trip  to  the Doctors for Chris, whom we thought  was not getting over bronchitus and swollen glands .

Our world was suddenly  turned  upside down inside out and  the silent screaming started : I wrote about the phone call   10  days  later:

All it takes is a phone call to  start you screaming

Hello!
It was a phone call that sent an icy cold that permeated through my very core and has not left me yet, my brain not wanting to “compute” what my ears were hearing, mouth dry, eyes welling with tears , the incredulousness, the denial , the confusion, the sheer terror that runs through your frame, your mind screaming, a few seconds that changes your life forever- nothing will ever be the same.

A phone call that leaves you weeping with fear, that terror, whose tentacles reach through your very being, tearing at your insides, ripping to shreds happiness and laughter. One of the people you love more than life itself, one that you gave birth to, cuddled, bathed, fed and protected is on Route 2 and has answered another (cell) phone to be told that test results (for possible bronchitis) have come back with a life threatening disease.

face of a cancer cell

Someone please wake me from this nightmare……..what am I supposed to do, what do I say, how can I do anything- someone , anyone why????????????????
The look on your husband’s face as he tries to understand the picture of what is happening with this conversation………

The dread disease that sends a mother into the world of deal making ,

No please – not my child , let it be me, take me ,God how can I bear this?
How can I be brave and make it better when my heart is exploding with pain, every part of me screaming from the gauntlet of emotions that are coursing through my very essence?

You are removed from the world around you –

Nothing matters, not the politics, not the crime, not the state of the roads, not the weddings, the weather, blogs, the pettiness, media , CRA’s, pontificators, principles , presidents, arguments ….. .nothing…. your world has shrunk, your planet consists of no more than 8 people and the all consuming fire of fear that your child is going to be in a world of hurt and you are helpless.


You want to curl up in a dark place – trying not to feel, to escape but the pain and confusion drags you back to the surface of desperation, despair and the reality that is now your world.

Eventually the body decides, through sheer exhaustion, to sleep but the nightmare doesn’t stop, you wake, a pillow wet with tears, a coldness that remains in your very core reminding you there is no escape- you truly do

“wake from sleep exhausted”(Susette Kelo)

Family , friends try to be encouraging and for that you are grateful but in a mother’s heart there is really nothing that they can do or say , you want to wake up from the nightmare, make it go away.

Make it stop

You look for anything that will give you hope -that there is a mistake but somehow inside you know the truth – it will not go away – it is going to have to be dealt with.

No matter how old your child becomes they will always be your child. You see not the young man or daughter – you see the chubby 2 year old with soft plump arms, the eyes that never change

only mummy can’t- no soft butterfly kisses or a cookie is going to fix this – there is no magic bandaid with happy faces.

Your life and that of your loved ones is contingent upon a surgeon’s knife and upon a lab in California – a stranger making a decision that will decide whether there is happiness , hope or pain to come in your life and that of your child. You are just another lab report , a number with an insurance billing code- a job of work.

This nightmare of speculation and waiting for the next body blow , like some sort of insidious torture technique, rips at you and the very fabric of your family . Life goes on around you but you are removed you go through the motions but you aren’t really there and you only care about the turmoil that one phone call caused.

The tests, the scans, the trips to the hospital, the waiting rooms with color co-ordinated furnishings, a laugh echoing through a hallway, people talking about the weather, a child crying as life goes on -biopsies, more waiting – hoping- praying pleading with a greater power

“please let them have this wrong ” “please let it be a mistake”

Watching every movement,

“are they eating , are they paler today , the cough – is it better, worse,?”

Trying to smile, to put on the brave face and make life normal until the results are in, cooking food no one really wants to eat , but the strength has to be kept up.

Laying awake watching the clock tick away the hours of life and darkness, waiting for morning……things always look better in the daylight,
but that isn’t true- the mornings come and there is no sanctuary in the watery, wintery sun. Days run into one another, hours, the calendar and the marked events deemed important enough to make note of are no longer significant in their passing.

The darkness envelopes and you think of other mothers, how do they cope with news that threatens their babies, their teenagers, the mothers whose sons and daughters return from war missing limbs and with horrific injuries, how do they cope even having them in harms way- day after day ?

How does a mother bear the news that her child is gone- no longer to hold them, to feel a heartbeat , to gaze with love upon their face, the hear their laugh , to see their eyes no more ….the gut wrenching sadness the rises up. unasked, unwanted, and overflows with the releasing of tears without warning.

Then the results and you know, even before the Doctor opens his mouth – you see his eyes- what they are…. you hear the bad news tempered with good news and hope and another journey begins…………and you know that somewhere another mother shares your pain and fear and is trying to make a deal

take me, not my child………………..

To  be continued

April 3, 2020 at 2:03 pm 3 comments

Medical Care- A Consumer’s perspective- Brookdale Pt 2

Part Onehttps://thatwoman.wordpress.com/2019/03/22/the-ratings-of-medical-facilities-series-it-begins/

Part Two- https://thatwoman.wordpress.com/2019/04/09/medical-care-from-a-consumers-perspective-ohio/

Part Three- https://thatwoman.wordpress.com/2019/04/22/medical-care-a-consumers-prospective-mercy-health-lorain/

Part Fourhttps://thatwoman.wordpress.com/2019/04/29/medical-care-a-consumers-perspective-mercy-health-lorain-2/

Part Five – https://thatwoman.wordpress.com/2019/05/27/medical-care-a-consumers-perspective-cleveland-clinic-rehab-hospital/

Part Sixhttps://thatwoman.wordpress.com/2019/06/15/medical-care-a-consumers-perspective-brookdale-skilled-nursing/

This will, hopefully,  be the last in the series of medical care received in various  medical facilities , three different types of medical care, and three different providers. Ideally  this post should be in two  parts but I want to  leave Brookdale behind  so  it will be lengthy.

The common denominator was the insurance coverage Medicare and Medical Mutual. Although  I  am fighting one bill ( will be explored in this post)   and the Medicare evaluation of Brookdale as mentioned in Part SIX is an issue for us, on the whole Medicare and Medical Mutual – so far – has been less than the nightmare I  thought it would be.

I believed we were spoiled by  the nursing staff/ aides and housekeeping staff  at Mercy  Health  Lorain, upon reflection they  set the bar very  high– a  few of their  physicians I  found decidedly  lacking ( see Part One).

 

Also , the Cleveland Clinic Rehabilitation was beautifully  clean and the food was very  good , rehab staff were excellent, you  knew what time  therapy  was every  day and who what and where so  families could adjust schedules to  participate with  the patient. You  knew who  the nurses were that day  and your aides. Unfortunately,  it was down to  a small percentage of aides  that spoiled the experience and also  caused a health issue ( in my  opinion) by  spreading C’Diff from one room to  another and then sending  contaminated material with  the patient to another facility. Brookdale

 

Ah! Brookdale, Westlake Ohio…..the 5 star Skilled nursing and rehabilitation facility  which is in the middle of a very  large Assisted Living and Senior Living

Brookdale Senior Living owns and operates over 1,000 senior living communities and retirement communities in the United States. Brookdale was established in 1978 and is based out of Brentwood, Tennessee. https://en.wikipedia.org/wiki/Brookdale_Senior_Living

The typical Brookdale Senior Living CNA salary is $12. CNA salaries at Brookdale Senior Living can range from $10 – $15. This estimate is based upon 66 Brookdale Senior Living CNA salary report(s) provided by employees or estimated based upon statistical methodshttps://www.glassdoor.com/Hourly-Pay/Brookdale-Senior-Living-CNA-Hourly-Pay-E6433_D_KO24,27.htm

Independent living prices average $2,900 monthly. The majority of locations will cost between $2,300 and $3,500. Skilled nursing communities are available as a Basic Monthly Service Rate of between $6,000 and $8,500.

I have not received the cost of our one  month stay at Brookdale Westlake “skilled nursing and rehab ” in Westlake as of today’s date but I do  know one charge was $400 per day.

After the poor experience of “transfer” from Cleveland Clinic Rehab Hosp. Avon  (which was paid for by  self -pay) I wasn’t in the best of moods . I understood from literature that I  had read  this was a “newer facilty”. I understood it to be around 10  years old. In my  opinion it was becoming a little “shabby” without the chic.

 

 

I should point out this is a very  large complex and the “skilled nursing” ( bit of an oxymoron in my  opinion) section had quite a large turnover of people coming in and out of rehab. However, my  first impression after leaving the gleaming white , bright Cleveland Clinic Rehabilitation Hospital(CCRH) was one of “OH!” and not in   a pleasant way.  The parking for the visitors for the skilled nursing/ rehab   section was awful, you  had to  hope the parking gods were on your side as you  drove round and round hoping for someone to  leave.

Please note this a critique of the Skilled Nursing and Rehabilitation Section of the complex, I  have no  thoughts or opinions as to  the rest of their complex and assisted living sections.

 

The facility  allows pet visits to  the patients rooms, all well and good but unlike The CCRH where there was a designated area  tile floor) for those  pet visits,   animals in all shapes and sizes routinely  walked the “carpeted corridors” , one little fella dragged his bottom along the carpet which  made me go  eeeewwwwwww. Had they  been bathed, de-fleaed , some looked as if they   weren’t exactly a pampered pet? I did take my  dog to  see her master at the CCRH after going through the paperwork and a shampoo. I  did not bring her to  Brookdale!

 

The room was  supposed to  be “homey” and an effort was made in the design and décor.  However too many  bumps and bruises on the paintwork, furniture  left an impression of needing a redecorating. The “homey”  bedspread  with  its little bag of goodies, had decidedly  seen better days , faded (hopefully)  through a lot of washing?  Again, being spoiled by  the open airiness of the CCRH with  large windows this was a bit of a disappointment , his room was dark and yes in my  opinion a bit dingy. The photo  from their website  is really not a great representation as to the “light” in  the room  we had.   After the pristine cleanliness of CCRH it was a bit of a disappointment Oh well thought I different facility  not a hospital .

 

The bed was actually  quite small, and no  sides. Apparently  “nursing homes” cannot restrict the occupants ( such  as  the side up  in a hospital)  neither can they  belt you  in  a wheel chair. This  was  all well and good but for a patient that has very  little trunk strength and one who  was a fall risk  this was not ideal. I  was told we could request the sides if we went through the paperwork and the Dr. must write out a prescription  to  have the sides installed. I said this is what I  wanted done. That was the last I heard, and actually  he fell out of the bed twice, a chair once  and the wheelchair once. Not so  good when it comes to  the fact he had just had major brain surgery after a fall.

 

After 4 days of being a resident  the bathroom became   the holding room for dirty  sheets, linens, towels  used diapers and pads ( remember that C’Diff) I  was ready  to  remove the patient from the 5 star facility and interaction with  some very  off putting aides  . I  called the head nurse and one of the administrators , after my  daughter was given the pads etc to  clean up the leaking Foley  bag. Since she was gowned and wiping down the room with cleaning cloths due to  the C’diff   maybe they  did think  she was a staff member, as we were told. Obviously  no-one else up  to  that point – knowing there was an issue with  C’diff wore those items. ( Benefit of the doubt)

Some aides did make a half hearted effort to “gown up” after the complaint, however,  latex gloves routinely  ended up  being  taken off and thrown into  the “general purpose waste basket”, well those that made it in as they  were thrown – I  was forever  picking these up and emptying the  room trash!

 

As for “housekeeping” I can’t remember that happening to  any  degree maybe weekly and only  once was there what I  call a thorough cleaning ( the Sunday  after I complained )  whereas in the previous two  facility  it was daily and sometimes twice a day.

 

 

The ‘weekend administrator” did get the bags of laundry and garbage out of the bathroom , did send in a cleaner  and apologized. The “head” nurse did get the Foley  bag removed, changed the mattress to  an air mattress,  as he was starting to  get a bed sore due to  being stationary and unable to  move on his own ( eg. roll over)  and was also very  uncomfortable due to  a pre-existing back condition. And so  it began…………

 

The rehab staff were very  good, he could not have intensive rehab at this facility , again only  so  often  due to  Medicare restrictions. But on the whole we were pleased. My  goal was to  have him ambulatory , able to  get into  a bed at home and to  be able to  get to  the bathroom. This was going to  mean  on a walker at least because this “Old House” was not wheelchair friendly.

Since there was definitely  an issue with  85% of the aides ( remember the staff that was above average according to  the Medicare evaluation  ) my  daughter would spend every  morning going with  him to  rehab, not the organized times etc of the CCRH we were expecting, she would stay  until after lunch  and I  would come later in the afternoon through the evening.  Night times were very bad for him, but he was on digoxin and although  he had adverse reactions  to  this drug we could not get  Doctors to  take him  off of it ( prescribed by  the ghost cardiologist from Mercy)

https://www.nhqualitycampaign.org/…/Drugs_that_may_cause_psychiatric_symptoms…visual hallucinations, fear, paranoia, agitation, anxiety. Sudden … Hallucinations, paranoia, delusions, confusion, mania, anxiety … Digoxin (Lanoxin*).
Note: the moment he was home and our cardiologist saw him digoxin was “nixed” and so  were many  of the other medications.
I am sure the administrative staff as well as a number of the aides were not at all happy  with  my  advocacy for my  husband. A “difficult patient” due to  medications, pain and confusion and a difficult wife 😉 . I  would ask you  to  remember this man went to  bed at Mercy  woke up eight days later after being intubated  and having respiratory  arrest unable to  move , unable to  speak ( due to  his vocal chords being stretched, ) not knowing where he was and what happened and having an 8 inch  slice taken out of his scalp. He remembers nothing at all from Mercy  , very  little from CCRH and too much  from Brookdale, Westlake.
 Patients were told they  could eat in the dining room  and for the most part the food was fine, the aides in the dining area were very  helpful  and the view of the duck pond a nice outlook. Mealtimes became a highlight to  one trapped in a wheelchair.
The call light response times were awful, in our case, of course being a “demanding patient” who  wanted to  use the bathroom or get out of the bed  and wheelchair due to  his discomfort didn’t help. The notice on the board in his room “call don’t fall” didn’t count for much.
The  Administrator did print out a  record of the response times to  the call light. Amazingly  they  had response times of 30  seconds  up  to  5 minutes.
What they  hadn’t realized with  the amount of time my  daughter and I  were putting in and the fact that as a blogger and ex- columnist I  have this penchant for documentation we also  kept a record of those call times and for the “most” part they  didn’t concur with  the print out. With  that printed out response time for his room number   I  received a bill for another patient, which  I  duly  returned, that had had that room previously.
March  17th  he fell again , this is an excerpt to  Medicare  appeals as they denied the cost of the emergency  room Dr.  after I  insisted Brookdale transport him to  St. John’s after yet another fall.

On March 17th I received a call from the night nursing staff at Brookdale that my husband had fallen trying to get out of his chair. The nurse informed me he had bruising to his abdomen and an abrasion to his left leg.They could not tell me if he had hit his head. Considering they stated he had only fallen 10 minutes previously to calling me   I was concerned they could not tell me whether he had hit his head and that bruising to the abdomen was already in place. I deemed it important considering the history of previous weeks of major brain bleed and surgery he should be checked out by someone other than an LPN. Hence the trip to St. John’s Westshore Emergency Dept. He was monitored in the ER and after a few hours sent back to Brookdale .

It is my contention that due to the recent history of falling and two brain bleeds the ER was the appropriate facility at 1 a.m in the morning. Brookdale, in my opinion did not have a qualified individual on duty or equipment to ascertain a diagnosis. The ER was the best place”

As time wore on and actually  his discharge times got put back , I  realized that, in our case , although the rehab therapy was very  good, it wasn’t enough. He was spending too much  time “waiting” and sitting in a wheelchair for the  two  to three hours of rehab and at least two  days a week where there was no  rehab at all. ( Again due to  Medicare restrictions). So  as his Dr. concurred and my  husband was unhappy  at the facility  and was at least able to  use the walker (with  help) and we felt we could manage his  care  we discharged him from Brookdale Westlake  on March 29th.
I am pleased to  say  that in April he went into out patient  physical therapy  at NeuroSpine Care, Sheffield Village, three times a week. He has progressed amazingly  well and they  have him transitioning to  a cane , able to  stand  and do  the things that make life normal. http://www.neurospinecare.com/
I do not agree with  Medicare ratings that this is a 5 star facility, but then again I  do  not know how low they  set the bar!
The best I  can give this facility  in rating , remembering it was supposed to  be, according to  Medicare, a 5 star facility  is a C minus. Although there were highlights such  as the rehab staff, the “aides” were another let down  and remember these are the individual that are dealing with  your loved one.  ( I  would say  my  general impression was that the aides were dealing with  quite a few patients each  shift and if their stated wages were anything to  go  by  they  need a raise in order the attract  better qualified individuals !
Remember this is a FOR PROFIT facility  and you  are the consumer not a charity  case and Medicare  and yourself will be paying for the “business”
of care and rehabilitation!!!!!!!
https://www.ibisworld.com/industry-trends/market-research-reports/healthcare-social-assistance/nursing-residential-care-facilities/nursing-care-facilities.html

 

July 11, 2019 at 1:20 pm Leave a comment

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