Posts filed under ‘health’
This past week has seen Carrie Fisher die and a day later her mother Debbie Reynolds die of what is being called a broken heart.
There has been much too-ing and fro-ing as to whether you can die of a broken heart or Takotsubo cardiomyopathy,
also known as transient apical ballooning syndrome, apical ballooning cardiomyopathy, stress-induced cardiomyopathy, broken-heart-syndrome and simply stress cardiomyopathy, is a type of non-ischemic cardiomyopathy in which there is a sudden temporary weakening of the myocardium (the muscle of the heart). Because this weakening can be triggered by emotional stress, such as the death of a loved one, the condition is also known as broken heart syndrome. It has also been reported in cases of partial drowning. The presence of a trigger such as emotional or physical has been reported in 33% to 100% of the cases.
Just a month and a half after you passed I wrote a post
And I have felt the pain in my chest, it is like a tight band , a crushing and tightening , it interferes with breathing, as if something has stopped my lungs from filling with air, holding ones breath too long underwater is a similar sensation . Just when you think you will drown in the pain and grief you surface , an explosion of tears and sobs pulling you back from the depths, a relief but also knowing that you have also lost an opportunity to be released from the slow suffocation of sorrow that has become your world.
And here I am “living with a broken heart”. How is that possible? Maybe my physical heart was strong, maybe because of my daughter and grandchildren acting as some sort of emotional relief valve – I am still here. If you had told me that would be the case in those first months after you passed I would have said ” not possible this gutting pain of losing you would kill me” . Every day I amazed another day has passed, week, month year and I am still walking upright .
I believe the anger kept me upright, an anger at the despicable behavior at your death and afterwards . For some people faith keeps them going but I know for me it was the combination of anger at “that” family, as well as the need to be there for my daughter and mother has continued to keep me on the planet. I also believe because I can write on this blog pouring out my heart has provided a relief valve of sorts.
What happens should I let go of the anger will my heart finally break; the anger stays because what was done I cannot undo………..
I love you Chris, with all the pieces of my broken heart.
So many October 3rds have come and gone in real time but not in my time . The anniversary of those last photos of you with your family before heading back to MD Anderson and Texas for the trial of SGN 35 to save your life. The head and shoulders shot taken that day – apparently used at the funeral home.
Friday , your dad, was undergoing a procedure. I was once again in a hospital- and I so hate hospitals – I gear myself to go – I put on an armor of self-protection- walk through the pitfalls of triggers – knowing where they are in those places.
I prepared myself as I drove to the appointment for the laughter of those individuals working in these places as they go about their working day, white coats and scrubs , the sound of rubber soles squeaking on polished tiles, the smells, the sights of those who lay in various positions hooked up to life sustaining fluids that drip silently into their veins, the alarms going off when they don’t , those sitting in wheelchairs and those who wait in chairs that provide no comfort, the sound of curtains being drawn around a patients bed, the calls for doctors and needs over the speakers, technicians scurrying with vials of blood in handy little carrying cases,
All routine every day happenings in any hospital but for me a minefield. I have managed in this recent bout of illness and emergency rooms with your dad. I have walked myself through each day each diagnosis, each “episode” ( meaning) “a finite period in which someone is affected by a specified illness”. A throw away word which has much more meaning to some than others.
“Oh he had an episode” during the night……………..
I took a book with me to try to read , that didn’t work , I read the words but did not comprehend , my brain too busy trying to control, block and filter out unwanted sights, sounds and thoughts. I sat and waited.
The procedure was taking longer than they had said. My mind started racing and my blocking mechanism to such thoughts kicked in to hold down the doubts and thoughts which started to form.
“CODE BLUE CATH LAB” ,
A rushing of movement, a curtain being pulled once more across the entrance to the lab corridor, people flying past yet at the same time controlled, disturbing the air where I sat, carts arriving , staff with an intense look to their faces heeding the call. Then nothing just quiet efficiency from those that remained, no more laughter a deadly seriousness entered the area like a spectre waiting to gather in all hope.
I watched the curtain across the corridor, willing it to open , waiting for your dad to reappear from the place behind – nothing and then another “Code Blue Cath Lab” call— more people going through and behind the curtain.
A nurse walked by and looked at me –
are you alright-
came the answer forced from my throat. She wasn’t to know I was no longer in St. John’s Westshore but in a waiting room all alone on a Thanksgiving Day at the Cleveland Clinic and another CODE BLUE continually ringing through the hall the Code Blue being called to your bedside.
The armor crumbled, the blocking wall fell slow motion like into so much dust, intentions to stay in the present ripped away – leaving the raw and exposed wound of a scar of grief that never fully heals. I was undone and collapsed like the wall once again in two worlds…………
Although not involved with our case, the nurse checked and it wasn’t your dad. Some other loved one was sending shock waves of terror to their family .
The nurse came back held my hand – “I couldn’t help but notice your eyes – they were so full of fear…..”
I didn’t explain that the woman she had helped and was talking to was just a mere shell – the rest of her was elsewhere still trying to breathe………..
We haven’t had many dogs in this old house, truth be told I am somewhat afraid of dogs, always have been. SHEENA came to us as a pup. Some cretin threw soap into the original fish pond killing all the fish . It was then I decided- time for a dog. Excitedly my two children accompanied me to the Rescue Shelter. Among the animals was a fairly large litter of mixed Shepherd and Labrador breed, they were tumbling and rough housing all over each other, nipping and yelping with joy and play.
Each of my children had their favorite. I noticed in the “getting to know” area a little two-year old being introduced to one of the pups. The little girl was pulling the pup’s ears, tail , screaming with delight and this pup just let her and was so calm .
“That is the pup ” I want
Sheena’s intelligence amazed me and there was a knowing look in her eyes you could see her very soul in those eyes . She remained patient with her family even when my mum’s little Tetley would visit. Although she had her ways of showing displeasure
MISTY was the designer dog ( Silver Lab), she was ten months old when she joined the family.
My daughter was trying to find a home for her as her family had to relocate without her. Stopping off here to visit on her way to show her to a prospective family ( I always wondered if this was by design as well) my son fell in love.
Trying poor Sheena’s patience once again Misty entered our lives.
Oh what a dog! She was more like Dino on the Flintstones except when it came to my son, a word or look from him and she became the world’s best trained animal. It was heartbreaking when Sheena succumbed to age and illness and poor Misty wandered the house looking for her friend. Life took a terrible turn and my son also succumbed to Cancer and left us, leaving Misty Morn to a house of grief.
It was Misty that pulled and demanded my husband leave his chair to look after her, it was Misty who insisted on walks, who didn’t leave him. Misty who spent hours sitting with him in the garden at all hours of the day , a nuzzle for comfort, her soft silky fur comforting to his hand, Misty who slept at his feet.
During this horrendous time of grief TETLEY
came to live here, in a house where laughter is now seldom heard, my mum having to give up her home and independence through no fault of hers –
Misty was not as patient as Sheena when it came to Tetley but they managed .
It was Misty who stopped the choking of grief in the night. But her heart too was broken and although she was only 5 it bled out. Oh! there is a technical term but she was Chris’ dog and her true master was no longer there to throw the balls, take her swimming or for runs. I think she stayed long enough to see us through, but once again we felt we had failed our son. We had gone to the Emergency Vet with Misty knowing something was not right And the consensus was she had to leave.
For two days I watched as grief and undeserved guilt once more took its terrible toll. My daughter said:
“We have to get Dad a dog to get him through and give him something to hold onto “
And so an internet search, a call to “Luv my Shepherd Pups” https://www.facebook.com/got2luvmyshepherdpups/ and the breeder Denise Cieslik. There was one pup available – the runt-. Nikki , Gavin and I went to be introduced.
This pup of life and love needed a name- there was great debate, none suggested suited everyone. Her name changed periodically through the ensuring days. I watched as this little bundle of energy, who seemed to know right from the outset that she was here to rescue my husband from his profound grief and bring life back into this house; she shadowed his every move and hence SHADOW , the name seemed to fit.
She has her ways and personality , she will bring the shoe of the person she wants to take notice of her to them , meets family with someone’s shoe or another gift when she likes you. She gives the mailman a heart attack if I have forgotten to close the main door before he arrives and barks around the property every morning to let the neighbors know she is on guard, her tail held high like waving a furry flag. No-one better enter the alley without her OK and she talks to every dog in the neighborhood. She definitely does not know her place- she reigns supreme .
She is my husband’s dog, it is for him she pines when goes out, for him she waits and it was his life she saved.
It has been hot here in Ohio, terrible damning days of unrelenting sun. The property next door needed a lot of work and to that end the summer days were spent getting it in order.
One July night, I was exhausted from daily life and routine and went to bed early , my husband downstairs with Shadow. It was 2:30 in the morning when I was rudely awakened by Shadow pawing at me and licking my face , not something she usually does unless there are fireworks or thunder. I told her
go away- downstairs
. I am selfish when I am asleep as there aren’t many such nights since my son passed.
Soon she was back again this time more insistent, I listened for thunder, fireworks nothing-
Go away Shadow go find Ritch
– she did .
However, he next thing I knew was she was literally thumping me with my husband’s shoe insistent once more I get up with her.
Grumbling, thinking he had fallen asleep in the chair and she wanted out I got up and went downstairs. Well he had fallen- but not asleep – he was stretched out- collapsed on the floor . Whilst I took in the sight before me, Shadow immediately went to him lay beside him and wouldn’t move – she stayed there whilst the rescue squad was called , it took two of us to get her outside – she wouldn’t leave him and the paramedics were leery of such an animal. Shadow barked and barked, waking the whole neighborhood as they put him on the gurney for the ambulance she tried jumping over the fence to follow . My mother told me she cried and whined the whole morning, pacing and off her food.
Had Shadow not woken me my husband would’ve died it was that serious! He passed out from severe dehydration and ended up with a condition called Rhabdomyolysis http://www.medicinenet.com/rhabdomyolysis/article.htm
In all their ways these dogs , including Tetley who brought comfort, companionship and love to my mum before he too passed this summer, give us their everything and unconditional love. Shadow though, is truly a rescue dog because she has rescued this family from so much and we owe her so much
It has been a month since I last wrote on this blog- July has come and gone- I dread July because bad things always seem to happen. Your grandfather died unexpectedly in July , ill-health news over the years has been diagnosed in July, and the engagement I wished had never happened – on the anniversary of the day your grandfather died. You weren’t to know that day held that significance as you had champagne and roses sent to the top of the Lorain Lighthouse with the “will you marry me” .
It was also the day and weekend I was introduced to avarice and selfishness of the “incoming family” . A cold shiver ran over me that day – harbinger of things to come. I couldn’t believe your “bride to be” and her ” aunts” spent the day and next day touting the engagement ring around to local jewelers to see its monetary worth.
You had paid six thousand for that ring and I ended up having it professionally evaluated by an independent jeweler just to reassure you and the “family” it was worth what you paid for it. You got what you paid for and in fact was worth two thousand more . But what kind of a “bride” does that ? I remember saying to you –
I don’t understand the ring was a symbol of love and not money, I was pleased with a little diamond because it was given in love..
Then all hell broke loose and once again ambulances, ICU’s waiting in uncomfortable chairs, watching clocks that didn’t seem to move. The machines, the IV’ fluids, every beep of the monitor, oxygen levels, breathing counts, heart rates, every foot fall of the nurses, the chairs, the smells another two weeks of memories flooding in from the dying days of you , the alarms, doctor’s faces, the looks- you know those looks, this is not good. The tests, the scans the results. The drives to and from the hospital four and five times a day, all those emotions invading my new world of worry- pushing them away in order to deal with the latest health crisis, crippling once again. Walking once again in the early morning across the hospital parking lot- holding ones’ breath hoping the news overnight was positive , crisis in the middle of the night , waiting for the damned phone NOT to ring in the early hours, no sleep, running on empty.
But your Nana picking up the slack at home- 97 years old- and I would come home to a meal, a clean house, my bed made and a cup of tea. Too tired to answer the many phone calls wanting an update.
So went July- and with it another part of me, a another slice of strength and tolerance …….. August…….. your birthday …… and the cycle continues ….. the past became the present and the future counted in days and the time between remains blurred in the moment
Life continues to be in an upheaval , what with concrete chunks through windows, downspouts of retribution being the “breaking news” as Nikki stated to me as I breakfasted with her.
Anymore Breaking News this morning?
Sounded like something YOU would say and it did bring a smile. As I get older , I realize there really is nothing you can do to stop uncivilized behavior or downright meanness for because we can sake.
It was your Great Uncle John’s 104th birthday this week. Memories returned- letting you drive ( on the wrong side of the road) down the lanes to his cottage when we were on our trip to England for soccer. We went to the pub and introduced you to “real cider” – You thought it like American cider, it wasn’t – as you soon found out , needless to say you did not drive back.
In order to escape my mind and life in Lorain I tuned out of the present and tuned into all things British Acorn TV-
I have been watching a series Lilies
Lilies details the lives of Iris, May and Ruby Moss, three Catholic sisters living with their widowed father and brother in a terraced house in Liverpool in the early 1920s. The story is set in the years immediately after the First World War and, as such, the after effects of that conflict are apparent
Their little two up – two down terraced house with the back “yard” once again brought back the familiar; Nana’s sister , my Auntie Kath, who had the self- same little house- although in Ipswich not Liverpool. I remember playing in such a familiar yard, the step down into the kitchen, my granddad plucking the chicken for Sunday dinner. The program covered the Scarlet Fever epidemic
and once again memory bells went off!
Your Nana had written about her experience with having Scarlet Fever during that epidemic of the late 1920’s. You had designed the cover of that book , written initially for Nikki the only grandchild she had at that time of writing , then adding more for you.
Nana has lived here in this house now for 4 years, thanks to mean mindedness of yet another “in law” relative. Although she never really bounced back from that episode in her life , more fragile than she was , she is still one of the very few to whom I can turn with my demons.
But what a joy it is to have my mother here, her wonderful take on life- so different from my own, caring hands that bring a cup of tea when I am in pieces, for such a tiny person she has the strength of the ages. Maybe it was what her generation had to deal with the poverty, the great depression, World War 2 being bombed three times , I don’t know all I do know is she is a hell of a lot stronger than I ever was or can be. As she helped clear the glass from the window destruction
she said with a smile
I think I will change my address to High Street, Afghanistan.
Can one imagine a little girl not much older than Gavin, being taken from your home by ambulance ( Fever Van) and put into an isolation hospital, no mother or father to visit? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC539454/
“The presence of a fever van in the street meant that a child would be forcibly taken from the family, with a strong likelihood of never returning, such was the high mortality of scarlet fever and diphtheria. Moreover, there were more materialistic concerns. The disinfection procedure that followed the removal of the child was likely to have a very destructive effect: ‘The child’s books and toys were to be destroyed, its bedroom disinfected by the application of concentrated solutions of powerful germicides to the floor, bed, walls and furniture. Wallpaper must also be stripped and burned’.5 These procedures caused much disruption and discomfort for the household.
The Isolation Hospital –
Hendon Isolation Hospital was the place Nana, her sister Renee, brothers- Mark and Paisy were taken . The hospital had been built near the Hendon Sewage Works and Johnson Chemical Factory – Hindsight – what were they thinking category!!!
Hospital marked with cross- you can see the proximity to the “sewage farm”
Nana remembers well the sewage farm, the smell coming in the windows but apparently the tomatoes grown in the vicinity of that sewage farm were huge and plentiful( apparently tomato seeds are not easily digested and sprout) and sewage is used even today http://jonbarron.org/article/tomatoes-salmonella-and-sewage#.VecOvunwsc8 .
For six weeks she , her sister and brothers stayed in that hospital, no contact with kith or kin or the outside world. Mere children , taken from all that was familiar put into in scratchy hospital shirts and boots. The food she remembered was awful-
“it was like a minced beef – only I am not sure how much beef there was in it- horrible tasting stuff and bread with no butter , the bread fell apart and crumbles
– her young mind turning to poetry wrote :
“There is a place, a barn of a place right in the middle of the sewer and mince and crumbs come out our bums and back into the middle of the sewer”
not bad for an 8-year-old .
The children were sectioned in very long open wards similar to the photo shown here ( no source found and believed to be in the public domain)
Her brothers were separated from the girls and were put in the men’s ward. Mark, just two years her senior, found a way to sneak from the men’s isolation ward where there was a large cupboard( storage) housing fruits and vegetables . Mark would appropriate the fruit , sneak in during the nurses break to his little sisters loaded with the fruit which eased their sore little throats. Nana said after the Scarlet Fever rash went away your outer layers of skin would flake off just like having had a bad sunburn. She thinks the taste of that wonderful fruit gave her the love of fruits and vegetables she has today.
” I think all those stolen fruits and raw vegetables Mark smuggled into us each night certainly helped us as Renee and I recuperated much quicker than anyone else on that ward.
This is a guest blog post by my wonderful friend – Paula Tobias- Paula has been fighting her own battle with Ovarian Cancer –
How are the Department of Defense and Ovarian Cancer connected?
When I read this yesterday I was in one of many daily Pain moments; you know, on the scale of 1 – 10 (10 being the worst) I was a 9. The weather and more importantly the surgery, chemo and subsequent meds, tests, x-rays and PET/CT scans I believe have something to do with the agony dealt with on a daily basis.
The Department of Defense has funded innovative biomedical research programs for years that impact troop readiness. The Ovarian Cancer Research Program was added in 1997 and has since been funding research primarily aimed at finding an early detection test and better treatments for ovarian cancer.
Finding an early detection test for ovarian cancer is of critical importance to the military. Currently, any active duty military woman with a suspected case of ovarian cancer must receive her treatment in the United States (due to the availability of specialists here), so correctly identifying women that either do or do not have ovarian cancer is of critical importance to the military. Over the last five years alone, over 2,600 military women have had a suspected case of ovarian cancer. “
Senator John McCain will be adding an amendment to a bill in the Senate that would strip many of the research programs run by the Department of Defense, including the $20 million for the Ovarian Cancer Research Program(OCRP). The OCRP funds $20 million in innovative, high-risk, high-reward ovarian cancer research each year.
Senate staffers are calling this the biggest threat to medical research in 20 years.
I immediately called my Senators and left voice mails with my history. It took a lot to maintain composure while doing this and as soon as I was done, Frank (my loving, caring, patient husband) came in from work and surprised me. Well I surprised him with a burst of tears and language a soldier would blush hearing. At the end of that tirade I said, “Do you think the Senator would be asking this if it were his testicles at stake?”
I support all battling their cancer diagnosis, patient or family. I volunteer at my Oncologists office to empathize with those. I try to offer hope and comfort.
• Click here to send your Senator an action alert email that will tell them to oppose the McCain Amendment.http://cqrcengage.com/ovarian/app/write-a-letter?0&engagementId=108520
• Call your Senators and tell them to oppose the McCain Amendment
Please help and pass along this information and if we (Frank is still my miracle -13 yr. Pancreatic Cancer Survivor) can help anyone with their Cancer Battle, contact Loraine and she’ll connect us. Paula Tobias
ED NOTE: Whilst looking for the date of the vote I came across the following – it seems McCain’s amendment will not only effect Ovarian Cancer funding but Prostate Cancer funding as well –
Senator McCain amendment might kill Prostate Cancer research funding
Again and again and again Senator McCain (R-AZ) has attacked the Congressionally Directed Medical Research Program (CDMRP), which for PROSTATE CANCER has been among the most productive research vehicles we have to conquer PROSTATE CANCER.
It is beyond my understanding why he has taken up this vendetta. Every year he is our biggest enemy, trying his best to stop the great progress we have made. As usual, he is at it again!
Senator McCain is a major advocate for funding of the Defense Department, but he seems not to understand that the money that flows to the CDMRP does not take one dollar away from our defense budget. The money that flows to the CDMRP is over and above any budget dollar that will go to the Defense Department. So, why the vendetta against the CDMRP, I cannot explain it.
January 3rd- All over this planet people are starting this year of 2015 with goals- losing weight , spending more time with family, giving up smoking etc. My goal, is to be able to sit in the chair in the den long enough to write my 3rd of the month post for you my son. Not to do so would be , for me , breaking faith with not letting the world forget as so many in your life have already done, that you existed were loved and made a difference.
Without going into too much detail, I have had chronic pain for a few months. First the drugs were tried and they took care of it so it was manageable for a few weeks at a time but then more and stronger were needed. I have learned through your months of “hospitals and doctors ” more negatives than I ever wished to know about the health care system and some “professionals and hospitals”. Because of my life for those many months watching and seeing the outcomes I now trust only my instincts , my intelligence and my own research.
Yes that is right Chris, the one thing I learned is that I should have taken more charge of what was happening to you- I didn’t. Would the outcome have been the same? In all probability YES but the pain of our journey would have been lessened and hope would not have been sold “wholesale” for as long as the insurance paid and you would not have been Cleveland Clinic “lab rat”.
As I researched and interviewed Drs. I refused to be sent to anyone having anything to do with my dreaded Cleveland Clinic or doctors that took their residency under a certain Program Director at South Pointe Hospital –
I knew too much about that aspect of Dr. training from personal experience.
You would be amazed at the faces of potential health care professionals when I interviewed them. I am sure a couple were getting out the “white coat” for me. But remember this is my body , my choice, they are not gods, just people earning a living in the health care industry and not all doctors are of the same level. Putting a MD or DO to their name doesn’t make then all-knowing or of more than a “passable” expertise ! You and your insurance are paying for their expertise and yet so often we turn ourselves over to people we don’t know or know very little about or who know about you and say “save me”. You trust in their ability or the ability to refer but to whom?? You have rights as a patient and I now choose to exercise those rights.
However, I have managed even with my “outrageous to some” criteria to find a few wonderful doctors, and two very special hospitals, small enough to know my name and to whom , I and my family are people and not just an insurance number or the next condo in the islands payment .
One, St. John West Shore http://www.sjws.net/
has literally saved my husband’s life twice in the past 18 months and have treated my strange proclivity’s with patience, caring and understanding.
The pain worsened , I managed with drugs and hot water bottles and a lot of understanding from family and friends for the two weeks it took for the “insurance” to tell my doctor it was Ok for the next step.
Every time I filled the red hot water bottle , too hot for my bare skin, I thought of you the hundreds of times the five hot water bottles we filled in Texas as you went through the “trial” with no one but you and I. The number of scalding hot baths you took every night to ease the pain in your body. You never complained to me I know you didn’t want to scare me , you were “eating pain pills like candy” I knew you were just trying “to be”. I watched the pain envelope you but the phone would ring and you would answer in a voice so strong so as to hide the agony you were going through.
December 17th found me having the first procedure which went well, in fact better than expected and for 10 wonderful days I had only very slight discomfort- the pain forgotten as I got through Christmas. I was waiting for the procedure in the operating room and the anesthesiologist as he stated ” you will feel a little burn then nothing”- I remember thinking
I wish you could make me feel nothing! I wish you and your anesthesia had something to erase this horrible debilitating grief( that you are unaware of as I lay here)
But just like the tsunami of grief that is held at bay whilst life continues, so the pain laid low for a bit roared back into being . It came back after departing for a just a brief while,- contained – only to break through the medical barrier stronger for the respite as my body probably was doing more than it should without the warning of pain.
New Years Eve, found me once again laying on the table waiting to have my misery relieved. I have in the past months learned to live outwardly not showing for the most part the grieving mess I really am- the powder and paint of normalcy painted on like a mask every morning.
This time although I felt nothing due to the anesthesia and how that works is a mystery to me and also to others
” Despite their necessity in modern medicine, scientists aren’t sure exactly how anesthetics work. The best theory suggests that they dissolve some of the fat present in brain cells, changing the cells’ activity. But, the precise mechanisms remain unknown. ”
Well the fat cells in my brain may have been dissolved but apparently “according to the nurse” my fat body ( she didn’t say that though) was not co-operating and was moving around in pain on the table for a bit even after my brain was anesthetized .
Not such a good thing for the doctor, I would assume, poised to do a delicate procedure. I, of course was unaware this happened although in my mind’s eye this great lump of a body laden with grief flopping around on the table half-naked probably wasn’t a great sight for him that New Years Eve. He earned his money that day.
So here it is January 2nd , my pain has lessened although I am not fully functional but I am endeavouring to sit in a chair for as long as it takes to finish this post for you. – a lap top may be in my future-
But somehow I will get this post written and posted even if I have to take jpgs of these scribbles and post them.
Another year without you in our lives will not be happy but hopefully it will at least be free from physical pain…. and I think of you every waking minute of every pain filled moment… I love you Chris
Disclaimer : The views and opinions in this post as to various doctors and hospitals are entirely my own based upon my varied experiences with such entities through out the illness of my family members and myself. I have no medical expertise but the life experience of having been there immersed in the world of medicine !