Posts filed under ‘Doctors/Physicians’
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………..
Yes! there is a turkey in the oven this morning – Queen Anne potatoes and roasted veggies getting prepared to take the journey to Nikki’s. There will be smiles and little boys getting into mischief
Family will gather and some of us will push away the memories of the last Thanksgiving Day when we “were a family complete” in order to make happy memories for children and realtives.
The tears will be held in check as best as able with a helping hand from those loved beyond all tears- they are my life support . I know I am not alone on this day , there are other mothers and fathers , sisters and brothers who are being brave this day and remembering and missing silently with controlled breathing –
Thanksgiving Day I sat all alone in a waiting room, hustled out of the ICU room as my son, with tears slowly filling his eyes dropping silently on his cheek, was being prepared for the vent as he had started choking on the sip of water I had given him.
I heard the last words he ever spoke that Thanksgiving Day. I waited in the ICU waiting room as Code Blue was called , the technicians coming out high fiving as they had completed the procedure in record time – celebrating their own kind of “touchdown”. Did they not realize they broke my heart…. and then a young doctor coming out to me asking if I wanted Clergy as my son was dying. That was our last Thanksgiving Chris. There was no one there in that waiting room- I was alone, totally in another world , reality crashing forth into my brain my heart not accepting….,
my mind whirling with wanting to stop time , to find a way to wake from an nightmare.
The Cretans of Control ( Lombardi and co)
showing up later with their nut rolls and recipe swap – I couldn’t grasp what was happening , who were these people invading my terror with their leftovers? –
The missing is monumental…. it is taking all I have to keep breathing.
So I am thankful this year for my own special life support, Nikki, Jim, my husband, Nana my wonderful friends, cousins and especially those two little boys Gavin and Braedyn, who make me smile when I struggle to breathe .
Part One – The Faces of Humira
Every day searches come to this blog on the drug Humira , cancer in all its obscenity and Hodgkin’s Lymphoma . They are people looking for answers, hope and direction but most of all answers…….
In part three of the series The Good???? Dr.
I touched upon the drug Humira and the story of Maxx Wendell – the obscenity of a drug that caused his young life to end and his mother’s torment to begin. Last week, a comment came to this blog requesting information about Humira. I contacted Maxx’s mother, Lisa , for her input and the question and her thoughts will be in Part Two. In the meantime, let us once again look at Humira . In the post “Selling of Hope” ( above ) I stated:
I have watched the commercial, as probably you have ( the commerce drug of the moment- this drug in the billions of dollars – bigger than some country’s budgets ) HUMIRA for many months and any of number of times a night. I have noted the voice over of the side effects- can cause . Lymphoma/ Cancer Tuberculosis ( this is a CURE!!!!!”) and HOW MANY SERIOUS SIDE EFFECTS HAPPENED? I walked the path of the Curable Lymphoma – Hodgkin’s
Why would anyone take this drug ? from their own website
What is a Black Box Warning :
“Important Safety Information About HUMIRA® (adalimumab)1
What is the most important information I should know about HUMIRA?
You should discuss the potential benefits and risks of HUMIRA with your doctor. HUMIRA is a TNF blocker medicine that can lower the ability of your immune system to fight infections. You should not start taking HUMIRA if you have any kind of infection unless your doctor says it is okay.
•Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. Your doctor should test you for TB before starting HUMIRA, and check you closely for signs and symptoms of TB during treatment with HUMIRA. If your doctor feels you are at risk, you may be treated with medicine for TB.
Cancer. For children and adults taking TNF blockers, including HUMIRA, the chance of getting lymphoma or other cancers may increase. There have been cases of unusual cancers in children, teenagers, and young adults using TNF blockers. Some people have developed a rare type of cancer called hepatosplenic T-cell lymphoma. This type of cancer often results in death. If using TNF blockers including HUMIRA, your chance of getting two types of skin cancer (basal cell and squamous cell) may increase. These types are generally not life-threatening if treated; tell your doctor if you have a bump or open sore that doesn’t heal.”
Let us look at the language in this Black Box Warning for the drug Humira that is played over and over and over again on our electronic media. The soft-spoken voice over for the commercial showing the young woman playing with her son , the guy living his life
as music plays and laughter abounds under the voice over quietly downplaying stating in a matter of fact way :
– serious infections , bacteria and cancer has happened and it has resulted in death and other cancer types have happened but they are “GENERALLY” aren’t life threatening if treated–
Question Humira( Abbott Laboratories ) Who pays for the non life threatening cancer to be treated? Abbott Laboratories ?
And while we are at it- Why don’t you show the faces of those “some people” their light, laughter and life denied to them and their families along side the happy families…. I don’t think that would make good ad copy would it.
And why are we showing these drug ads to the general population-
Could it be you want the general population to play Dr.? Is this just another avenue to get to the physicians prescription pad?
Because in Humira’s disclaimers they state again and again “ask your doctor” – your doctor should- tell your doctor.
So why are you not just advertising to “doctors “? We know that you and every other pharmaceutical group canvass and sell their pills and potions to “the doctor”.
But this is the biggest of businesses and Abbott Laboratories say it themselves as to why they have such an aggressive ad campaign- Emphasis mine!
First, ‘STRONG PATIENT DEMAND’ has lead to global market share gains in both dermatology and gastroenterology.”
Ah! there you have it – it isn’t the doctors driving Humira’s success it is the “patients demands”
From Abbotts report October 2012
Abbott Laboratories Management Discusses Q3 2012 Results – Earnings Call Transcript
Certainly, HUMIRA remains the cornerstone of our portfolio and is a strong driver for AbbVie, and will remain so. Not many brands are able to achieve and sustain the level of performance we’ve demonstrated with HUMIRA.
Clearly, HUMIRA has a strong clinical profile. Our commercial, our development and our regulatory execution on HUMIRA have been outstanding. HUMIRA’s performance continues to be exceptional, as evidenced by the strong double-digit growth this year.
Several factors are driving that performance. First, strong patient demand has lead to global market share gains in both dermatology and gastroenterology. Second, the addition of 2 new indications for patients; UC here in the U.S. and Europe, as well as axial SpA in Europe. HUMIRA now treats a total of 8 approved indications and 4 more in late-stage development.
Finally, the global biologic market growth remains strong, and HUMIRA continues to outpace that growth. We expect HUMIRA demand to continue to grow, given the relative modest biologic penetration rates across all market segments, but in particular, the dermatology segment, where biological penetration rates are still mid single digits.
TO BE CONTINUED ……..
There is an article today on the BBC website about the Giant Black Hole getting set to feed in our galaxy
“Black holes have had a bad rap. We’ve always thought of them as these dark, brooding destructive entities, but it turns out their influence is much more creative. Black holes help to regulate galaxies, acting a bit like a pressure valve that prevents star formation from running away with itself”.
The Black Hole a pressure valve??? I have fought the “black hole” that pulls me in my grief like the clouds of cosmic dust that I have become – no longer stable and solid -just fragments of what I once was sliding around without direction in my own painful universe.
This week I am between worlds – I live and relive the last days of Chris’s existence on this planet- the terrors that held me and still reach out- I tried to find answers in these months of longing for release from a gravity of grief. There are no answers – where is the love and compassion that should come with the death of a son? Lost – in greed and selfishness. And yet I remember … these days of just yesterday ……….
THE ACTS OF PEOPLE- I still can’t understand-
I still find this scenario incredible What kind of people are more concerned in the “funeral fashion statement” of their son-in-law and new husband will wear as he is clinging to life. Who calmly looks at their dying groom and is concerned about jacket or no jacket, what kind of people are these ?- How could you even discuss this as a sister holds her dying brothers hand and tries to give him comfort. How could Angela even contemplate that next move? I just know that anyone who loved my son deeply would not be thinking of “dressing him in his coffin” in their last moments together !
I don’t know how I am going to write this today- I have been told due to the surgery earlier in the week not to blow my nose – ( I won’t go into detail)- that is hard not to do when tears are streaming down cheeks and all that goes with that. Writing about the events of the past year has been tremendously difficult – there are times I am crying so hard I can’t see- but our story has to be told- the truth must see the light of day because Chris is worth every tear , every word- He was taken from this family- by Cancer and by self-serving cruelty – this is the story as it effected and still effects this family and it will be written – it is the only closure given to me………….
The Alpha- The beginning of another kind of hell that day of losing our hope and your life that continues to swirl and pull – no peace -a closure denied – – the discovery of wickedness that shows the depths of selfishness that can be found even amongst those that preach compassion and love – an evil wickedness that compounds and adds to the already unthinkable that of outliving your child.
As shock and disbelief mixed with grief and love stirred with wickedness of self-service of those that proclaim faith an anger started to fill the emptiness of the vessel of my being -an anger that replaced the hope- an anger that grew with every passing day fed by the actions of cruelty and selfishness of those that professed a love.
September 2009– found only 4 blog posts for that month- We had been given the devastating news on August 29th delivered with cold clinical monotone by Dr. Brad Pohlman – as he strode through the door into the “holding room” where Chris, Angela , Nikki and I sat.
“This is bad- very bad – the cancer is back- your only hope for a cure is SGN 35 – and we ( the Cleveland Clinic) closed our trial last Friday-”
I remember thinking at the time as his words only confirmed my greatest fear of the last weeks:
“you have messed around with tests, biopsies, for 4 weeks – knowing as we did, 8 days previously, the cancer was back and you couldn’t have put him on the list for the trial. Bloody Drs. they knew days ago the prognosis- he knew the results the day before when we were called to come in- why wasn’t he or they ready with information as to the next step”.
I looked over at you, behind my own sunglasses as you absorbed the news , there was a swallowing and a slight lifting of your chin only lower it to your chest, your nostrils flared slightly as you sucked in a breath, your knuckles turned white as your hands balled into fists at your side, lips pressed tight together .
We waited, silenced, to be told the next course of action – Dr Pohlman folded his slim frame , with his still elegant slacks and starched white coat and expensive leather loafers into an empty chair.
“ SGN 35 is your only hope. You will need to find a trial that is still open- but most have closed, as we did, on Friday”
I don’t understand
I said- anger at this man who just delivered my son’s death sentence with the same matter of factness as a mechanic telling you “You need new tires”.
Chris can’t get on the trial here????-
stated the clinician in his lab coat
we are allowed only so many and we are full and have a waiting list – St Louis might have an opening- I will check on the internet this weekend……
I couldn’t believe what I was hearing ” he would check the internet over the weekend-” Hell he has a staff of dozens why wasn’t that information available already?
My son, it seemed to me was a “failure” of the double stem cell transplant – his refractory Hodgkin’s lymphoma back with a vengeance – he would not to be counted as a “medical” success story and so was seemingly to me and to Nikki was being passed off- the lab rat didn’t pass the test- I could almost see the wiping of the hands .
I looked at you sitting so still, back pressed hard against the wall( trying to keep upright), eyes hidden behind your aviator sunglasses once again, hiding the tears I know were filling your eyes . Nikki looking with utter disbelief at this man with the white lab coat , diamond earing and white frame glasses who had just delivered a death sentence.
Nikki spoke, her tone incredulous :
What do you mean St. Louis? – this is the Cleveland Clinic you are supposed to be the best- and you are done? Can’t you put Chris on SGN 35 here on compassionate grounds?
A slight shrug of his shoulders, No! as she shook his head-the beautifully coiffered silvery hair not moving. I got the feeling he just wanted out of there…..
Angela, who had said nothing during this time except
” we purchased a juicer and Chris is drinking fresh juices” –
Pohlman looked at this ‘Dr. in training” with a surprise flickering across his face and said
“be careful with how much you do with that it might throw off any treatment results .”
Nikki said :
Isn’t there anything the Clinic can do?
came the reply from Dr. Pohlman .
We could try a ” Allogeneic” stem cell transplant . Are you his sister? We could test you but I think the insurance company will deny it – Chris’ immune system is not recognizing the cancer and chances are your immune system won’t kick in in time , but we will test you, if you like, to see if there is a match I will have the paperwork sent to you .
Meanwhile you sat, saying nothing as your very hope of a life disappearing, as you were “discussed” – words of death echoing off the stark cold walls. I know you daren’t speak. Finally interview over, you walked from the room Nikki and Angela followed you out the door. I stayed back stood up , legs shaking , my world crashing in ….
I looked at this Dr. so removed from the cruel news he had delivered and I said:
Is there nothing ? Chris did every damned thing he was told to do – you sat here on June 29th after the double stem cell transplant, in this very room telling me he was clear- dismissing me – when I questioned his need for another PET scan in August? You said – NO! there is no need all his CT scans are clear -He wouldn’t need to be seen until November – this can’t be happening- isn’t there anything you can do you are his Dr. the trial is here – hope is here
I could hear myself “begging” this man for hope…….
I will check with St. Louis, you will have to excuse me , I had to fit Chris in- I have patients waiting…….
The next days were a whirlwind of everyone of us on the internet and phone following leads trying to find trials with openings with the SGN35- St. Louis, Chicago became options but it was to MD Anderson , Houston Texas you went- they called could you “be there tomorrow” for an appointment and we made sure you were. Your Labor day exploring a Texas ranch whilst you waited to start with SGN 35
I wrote, on the following, September 3rd…….
this will work it has to be a sign- fate or whomever decides our destiny couldn’t be so cruel as to keep giving hope only to dash us on the rocks of despair- to give us the “avenue of against the odds”.
3 months later -you died but not from the cancer
NOTE: I have also categorised this post under the Doctors and Physician series “The Good Doctor”, although this post is a little out of the ‘running order”.
This is the story of what happened to THIS family from MY perspective, as we lived through those dark days that ultimately took my son -and from my own “non medical” opinion– I realize there are thousands of experiences with blood cancers and the Cleveland Clinic and I am sure with great success for some
I am hoping readers experiencing the obscenity of Cancer and other catastrophic illness will find they aren’t alone and maybe just maybe those of the white coats who become immune to emotions of death , as they scan the records of their next patient in the holding room, will remember the beating heart does more than pump blood……………….
It isn’t as if I have writers’ block , maybe it is grief gridlock or that I am a becoming a marshmallowy pillow of a vehicle . I keep absorbing the information, the stories, tucking away the posts in a part of my mind but although I am taking on board the fuel I just can’t get to the gas pedal. I could write about so many things – most of them already started:
The continuing journey of in search of my son but the stop sign on that particular street is the cost to continue – it takes a great toll on me physically and emotionally- I have to move forward slowly – there is no E-Z pass available .
Healthcare and the Drs. – that has been started with so much to cover but I know eventually I will have to pull out the terrible memories at the Cleveland Clinic and relive those days of horror in order to explain the treatment courses for “refractory Hodgkin’s Lymphoma”.
This particular stop sign finds me with “guilt gridlock” as I know I can help those that come to my blog every day with the search term “is Hodgkin’s curable”. I know, just like I did, they need and want answers in lay terms and I could help with the potholes and speed bumps and no exits on that journey. The engine of bravery is barely ticking over.
The research needed and time to discover the who is who- there is an apathy that has controlled me these past weeks and I can’t get out of 1st gear on this one. So the information sits and idles on my desk top!
It is all there waiting – the caution lights blinking – because the road to be followed is not on the map and the responsibility of the driver’s seat has left me stalled. The openness of the road is daunting.
That vehicle is so full it cannot get past the weight scales to get back on the road. There are just so many passengers it is a quandary as to who should get off the bus first. There are 65 categories on this blog and I have a tale to tell for each and everyone of them .
Freedom – the price of freedom – and the perception of freedom- is freedom relative?
Exploring this road finds me in need of a licence to continue?
This vehicle has an empty seat and its fuel gauge is hovering around low so short trips are the outcome . There seems to be “missing” stops signs along the way.
So here I am in the lay by of life at the moment assessing thedamage of continuous fender benders waiting for the gridlock to break and finding the energy needed to start the engine and continue.
“I feel as if I had been in the world a thousand years, and I trail my life behind me like an endless scarf“Act II – The Sea-Gull – Anton Chekhov (1860-1904)
I can relate – sometimes the scarf will twist, knot , catch, pulling at my throat forcing me to stop before I strangle.
Other times the wind of friendship will playfully lift its length from the path that is mine to tread causing the weight to be taken from me if just for a brief moment of respite. The freedom of lightness of days when I danced along on my journey eyes unseeing the succubus of wickedness , deceit and control, selfishness, hypocrisy and disease that lay in wait –
reaching out with bony fingers from the safety of their impenetrable blackness of control to grasp, to catch, to pull me into the realm of unhappiness and the dank decaying darkness of loss of trust .
A brief blinding of my eyes as the folds hid from view their true nature and now the scarf shape shifts and wraps like a serpent around my heart bringing with it the biting cold of their deeds and the obscenity of the cancer.
Yet once again, gentle hands of love and friendship tug and pull me back, loosening the grip of those who dwell in the darkness for just another moment in the light.
Sketch of Isadora Duncan – Jose Clara
It’s discouraging to think how many people are SHOCKED BY HONESTY by and HOW FEW BY DECEIT.”
― Noël Coward, Blithe Spirit
Duncan’s fondness for flowing scarves was the cause of her death in an automobile accident in Nice, France when she was passenger in an Amilcar, and her silk scarf, draped around her neck, became entangled around the open-spoked wheels and rear axle, breaking her neck.