Posts filed under ‘health’
Strength to continue…… No! the mothers, who mourn their child, don’t really continue or for that matter to “move on”- they pull and drag themselves through each day and into the next- fragmented and yet never becoming “whole” again. We have crutches , we have game faces, we have tricks to stay the course of continuing. The grief can numb you and yet rip you to pieces in an instant. The cohesiveness of you, my son, is no longer there the hold my heart and soul together.
I dread these days of memory:
and yet I relive those last days of your life over and over and over again daily. So why the dread of facing another December 3rd? December 3rd is just another day where I am holding my breath , trying to hold back the rush of tears, fighting to stay upright and the longing for this to be a nightmare from which I will wake.
The very nature of its coming- December 3rd brings with it such an intensity of emotions that I know will cause me to flood my pillow with tears and tear at the fabric of stillness that is night with my sobbing. The dull chronic pain I live with everyday becomes a shrieking, stabbing coldness of spirit permeating every thought, every fiber of my being. I am lost to comfort.
Recently, I was asked to participate in a “grief project” for an Arizona university. The project, as I understand it, will be presented this week. Basically the gist was how grieving parents memorialize their “lost” children .
The last question asked as I filled out the projects questions is as follows:
Please use the space below to share any other important information about your child………
Our lives changed so much the day my son died. Every moment from the time of diagnosis to his death is as fresh in our minds as if it were yesterday. There is a sort of parallel world we walk in the present – we are physically here but at the same time elsewhere in a world of horror and hope- the obscenity that is cancer will do that to you.
Watching your son lose his grip on life day after day week after week, the tests and finally helplessly watching him slip away hooked up to machines being unable to fulfill the promises parents make.
The guilt of surviving, the questioning of WHY, the deals you did in your head and out loud to a “being or entity” that ignored – realizing you are alone – for all the platitudes foisted upon you ” the God’s plan” the better place .. The people who do not have the words to comfort- how could they – trot out inane phrases – you know they mean well but they just add to the anger, because there is anger .
You don’t move on, at least we don’t, we continue , we love our daughter, son in law and grandchildren – they give us laughter and strength but always lingering on the peripheral of life is the “missing of memories that should have been” . There will never be total happiness in our lives – there can’t be. Maybe it would have been easier with the crutch of an organized religion to support one- I don’t know- it is Chris that comforts – his smile – his
his humor his thoughts as they are expressed in the works he left with us…………
Childhood living is easy to do
The things you wanted I bought them for you
Graceless lady you know who I am
You know I can’t let you slide through my hands
Wild horses couldn’t drag me away
Wild, wild horses, couldn’t drag me away
I watched you suffer a dull aching pain
Now you decided to show me the same
No sweeping exits or offstage lines
Could make me feel bitter or treat you unkind
Wild horses couldn’t drag me away
Wild horses couldn’t drag me away
Wild horses couldn’t drag me away
Wild horses couldn’t drag me away
Wild horses we will ride them someday
Wild horses, wild horses
A lot of us , at least one in three, have had to deal with someone in our immediate family having cancer- it is an obscenity! We have watched as loved ones have been hooked up to innocuous looking IV’s – bland liquid – belaying the fact they are full of poisons . The tip-off to their danger could be the way the nurses etc dress when they administer the noxious cocktail.
17% of cancer nurses unintentionally exposed to chemotherapy, U-M study finds
Researchers stress importance of implementing nurse safety measures around these highly toxic drugs
Unintentional chemotherapy exposure can affect the nervous system, impair the reproductive system and bring an increased risk of developing blood cancers in the future, the researchers said. These exposures are as dangerous to a nurse’s health as being accidentally stuck with a needle, the researchers said.
I still can see my son hooked up to the IV’s pumping poison into his body- Why would anyone knowingly put their child in such a terrible place? To save his life and that is why millions of people all over this world subject themselves to the poisons of a hopeful cure. It is a trade-off because although the poisons kill the good cells they hopefully kill the cancer. It is a trade-off cure or be killed. You make that decision.
However with drugs that tout ” possible remission” – such as Humira – they are being touted for non – life threatening conditions-
Humira (adalimumab) is a TNF inhibitor approved for the treatment of rheumatoid arthritis, chronic plaque psoriasis, Crohn’s disease, ankylosing spondylitis, psoriatic arthritis, and polyarticular juvenile idiopathic arthritis. Humira is used for pain relief and to reduce inflammation in a number of autoimmune diseases.
On Jul, 16, 2013: 130,505 people reported to have side effects when taking Humira. Among them, 1,024 people (0.78%) have Death.
The reason for the last two posts came to this blog in the form of a comment Wendy was looking for help and information :
I have been on Humira for 18 months now and have now decided to stop injecting it. Four months ago I was diagnosed with multiple pulmonary Embolism in both lungs. I was cycling 150km a week and very fit. I am still in extreme pain though my clots have dissolved from Warfarin therapy. No one can tell why I am in so much pain and also will not suggest that it may be the Humira. It seems that this wonder drug has caused a life threatening condition for me with no answers from anyone. So, I will discontinue treatment and see if I improve. I only hope that I have not developed long-term damage to my body that can not be reversed.
I contacted Lisa and others who have suffered untold pain with the deaths of their loved ones – and the “ MINIMALIZATION MANTRA” of those in the “healing business” and asked for their help in answering Wendy – From a mum who also lost her son to the Minimalization Mantra
If you decide to take Humira, or any other similar immune suppressant drug, make sure you have monthly blood work done. If there is any abnormal result, ask to be tested specifically for hstcl. It takes a specific test to identify it.
hepatosplenic t-cell lymphoma mostly/usually results in death (vs often). It is very rare to survive it.
Yes, the Humira ads/pamphlets make the side effects sound like no big deal – easy to take care of. Sickening. Rob didn’t take Humira, but was on Imuran/Azathioprine, another immune suppressor. We were told it was the thing to take, no big deal, no checking blood counts regularly. And no one tested for hstcl until he was critical – even though I told every doctor we saw that he was on Imuran for uc(ulcerative colitis). Even his GI didn’t get it. “It is so rare.” Only because there is no required reporting… so how would they know.
As the mother of Maxx Wendell, the boy whose story about Humira appears on Loraine’s blog,
I’d like to offer a few thoughts on the very complex nature of the patient’s experience of what it means to suffer the consequences of medical and/or pharmaceutical negligence.
There is a tendency to simplify the myriad interconnected factors that come into play when one is ill and prescribed a medication that offers either cure or, as significant, hope for one. We believe that if we do what we are advised by the professionals–our doctors– to do, if we follow the rules, we will reap the eventual reward– a return to health and well being. If we do not….then we are responsible for what may occur as a result of a failure to comply.
Essentially, as patients we are almost goaded (and what choice, really do we have to do otherwise?) into placing our trust, our lives, into the hands of those who, according to those rules, are equipped to know what is best for us. When everything works, we consider ourselves to have done “the right thing.” We are grateful to our doctors, we pride ourselves on our intelligence to have located the best practitioner-”expert”, we are gratified in ways that only the once ill, now recovered can be.
But, just as often, everything doesn’t work. Just as often, everything not only fails to work, but breaks apart slowly, horrifically, unimaginably into irretrievable bits no matter our commitment or compliance. No matter the “evidence-based science.”
It is never simple to be ill, to be diagnosed with a disease or condition that requires immediate attention and/or a protocol for managing a long-term chronic situation, but because we live in a time when science and technology are packaged (to the tune of billions of profit dollars) to offer the promise of a long-lived, disease-free life we cannot help but trust in the illusion that this is always possible. And for some it is.
For millions of others, however, it is not. And when it becomes clear that “science” can’t save or help us, as patients we become failures. On every level. Regardless of what we did, or how hard we fought, how many questions we asked, how intelligent we believed we and/or are doctors were, we failed. We are sick, we will stay sick, and many of us will die. When that happens, we cannot help but look for people, situations, circumstances to blame.
Frequently, there are no identifiable causes. But just as frequently there are–and particularly so whenever drugs are involved. Maxx died from Hepatosplenic T-Cell Lymphoma only because of the drugs he took, only because, despite available scientific knowledge and evidence known as early as 2002, the pharmaceutical companies in concert with a profit-compromised, inefficient FDA did not make the information we needed to keep him from ever becoming ill in the first place available in time to do so. Maxx died in 2007.
Of the three drugs he took for years in the manner they were prescribed and about which deadly side-effects were known, but discounted as “statistically insignificant,” one did not receive a Black Box warning until 2008 another in 2012, and one other not at all.
Millions of people take drugs that will either help, or possibly kill them. Millions of people have died from medications that have turned out to be potentially deadly and about which this was known. It happens every day.
Ultimately, this reality, however disturbing, however tragic, means little in terms of helping those who are suffering or dying to answer the questions, “What now?”
When we are sick, we will go to a doctor and we will be told to do something, take something, have a procedure. We will have to make a choice but we must understand that our choices will not, cannot, ever really be based upon full disclosure because there is no such thing. Whether intentionally or not, we can never know everything there is to know about what we most need to understand–how or IF it is possible to recapture and maintain our health, or if our choice to comply may indeed have deadly implications. We cannot know because we ARE NOT TOLD.
What happened to Maxx is not just about Humira, or any of the drugs he was prescribed, although many, if not most, are reading this site searching for information about this particular drug. What befell my son is a tragedy, but his is not a new story.
It is the same story that involves the same decision-making process and similar risks, for millions of others who must take medication. The Gordion Knot is this: No matter how hard we may look for answers we can never be advised fully of any risk in all its possible permutations. And it is this that we must understand in the very beginning; this that must also be a crucial component of the decision-making process—that the possibility for utter annihilation lurks within every choice that as patients we may make.
We must simply assume on the face of it that we only see the tip of the iceberg–that below the surface there is much more that may prove catastrophic. And most importantly, we, as patients, are not to blame, we are not at fault. We do the best we can given the fact that we are all only ever provided with the favorable, positive information the drug companies are eager to release.
Had we known that these drugs harbored even a 00000000000000.1% chance that patients in a population of young men between the ages of 16 and 32 could develop a terminal cancer as a “side effect,” he would not have taken the drug. We did not know this and we DID ask again and again for years. “What are the risks? What are the most serious side effects? How long does he have to take these drugs?”
And the answers were always the same–
any risk for incurring dangerous (not to mention, deadly) side-effects are miniscule and the benefit of the medication outweighed any dangers.
What few studies that did exist about the deadly implications of recombinant immuno-suppressive drug therapy in young adolescent males with ulcerative colitis WERE NOT RELEASED either to doctors or the general public. Should we have assumed that what we did not know, even in our wildest imaginings was just as likely to destroy our lives, to kill him, as not? At what point does the term “patient input” become an absurd joke?
This is the bottom line, what patients MUST understand before they take any medication: Whatever the condition, whatever the drug, whatever the situation, you can be certain that some professional somewhere, a so-called an expert, a drug company’s scientific research team, has or is deliberately suppressing life-saving information and someone, somewhere in a pharmaceutical marketing department is working hard to package and present only partial truths, pieces of a clinical reality, that may or may not have disastrous consequences for yourself or those you love most in the world.
The worst CAN and does happen all the time. Critical information on the Internet about these drugs was not available in 2002, but access to this kind of knowledge IS available now.
Be very, very careful.
As another commenter stated- my dear friend- Paula who herself has been hooked up to the Kill or Cure IV
I found it interesting watching the ads on TV for all the meds. It’s called push/pull. Push it on the consumer, pull them into their doctors asking for it. Notice when they’re saying the fine print they have happy people having fun, living their lives and you don’t hear the warning, because that’s what you want.
Follow the money.
Paula”s story found here :
The last few days have found even my “auto pilot” the part of me that takes over in my “present life” having issues. I usually rely upon my auto pilot to see me through the days when my brain has me elsewhere in the past.
However something is amiss, I have waited to have it “clear” or like some kind of emotional pacemaker kick in . Not happening.
Pride Day, Settlers’ Watch, reading about “circumvention and diversion ” which is ripe for a post, Success for All fiasco, transparency in the hierarchy of Lorain City Schools, Cheryl Atkinson and her 76 trombones, scholarships and how Thomas the Tank Engine and the Cuyahoga Valley trip “tanked”, arson and cretins of Lorain
any number of subjects I am in a sort holding pattern
As I walked back from Settlers’ Watch last night knowing that I had a post half-finished to put up for this morning I started to feel quite unwell. I wondered
is this it? Am I done with this planet?
I wasn’t too concerned, I admit it, after all I had had shower and clean underwear but the thought crossed my mind if I tanked the last post on my blog would be the last thing written, my last words so to speak. Oh! I have my obituary half written – after the dreadful obit with regard to my son no other bugger is writing mine so that has to be finished so it can be the “last post” :) . I wonder if you know how weird it is to write your own obit?
People eating and laughing and sharing news of the day in the ICU waiting rooms whilst waiting for my son’s last breath left me disgusted and full of anger. The Gypsy Caravan that attended my son’s last days was to me abhorrent and tasteless and not of my culture or his and robbed death of dignity .
I read his Obituary on Saturday in the local paper. Was this my wonderful young man whose life was put into so many cents a line? Was this MY Chris – I could not let that be the last words written about my son so I have composed a letter which I hope will be a more fitting epitaph to one whose passing has broken a mother’s, father’s and sister’s heart.The Unbearable Pain of Being
NOTE: That Woman- I am no stranger to the look on a doctor’s face and those words- You have Cancer - you really only hear the one word CANCER as your world spins ,dives, a tiltawhirl of emotions, questions and terror, invade your being.
I have blogged about my son Chris and the “curable” Hodgkin’s Lymphoma that wasn’t cured.
Every day searches come to this blog looking for answers and a way through . I still cannot find the strength to document Chris’s journey, the hospitals , the treatment , his thoughts as he went through . I know his journey and the information would help these people who search but I am just not brave enough to start back on that time and relive those days, it is bad enough I daily relive his passing.
However, the same cannot be said of my dear and beautiful friend Paula – she has put herself aside once again to help others. Cancer will find its obscene way into every family, none of us are immune , and because it has found its mark once does not mean we have paid our dues to this vile disease. Paula is a member of one such family.
After you read Paula’s words if you have any questions or need any information she has agreed to answer personal emails , if she can be of help. Please email me at Lorritch7@gmail.com and I will forward them
“You have Stage 3 aggressive cancer.”
You’d think it was the beginning of my journey with cancer, it wasn’t. I’ve been to this rodeo with others before, Frank’s pancreatic 11 years ago, my sister-in-law’s brain cancer, the dozens of families and patients we’ve worked with over the years. It wasn’t even the first time I thought I had ovarian cancer; it probably began a year prior.
I had someone ask
“What did you think when you were told?”
My answer was,
“What have I done to my family?”
I was told “Keep strong” but I learned it takes a lot of strength to ask for help and to accept help.
You don’t have to tough out the pain, physical or mental. In fact, I realized that keeping a positive outlook gives the chemo the chance to work. I’m sure we’ve all heard that stress can cause cancer, so don’t give it a chance.
Sleep is a luxury and is needed to heal; you can’t help but be emotional if you aren’t getting your sleep.
People don’t usually know what to say or do when someone has cancer. Instead of asking what can I do, just do it.
Example: Ask what day and what dish shall you bring. It’s winter, shovel their driveway, call and say I’m going grocery shopping what do you need, better yet tell them to start a list each week and you usually go on Wednesday, call the day before and get their list. We’ve become Drug Marts best customer, if you’re going to a drug store call and ask if you can pick something up. I was amazed at how excited I became over surprise gifts and cards.
Always be positive when talking to a cancer patient, I had many nice compliments on my scarves or my outfit. I had an issue with wigs, we won’t even go into the horror of losing your hair, my Ob/Gyn had the best comment: “it’s only temporary”.
Back to the wig, I have a big fat Irish head, wigs from the American Cancer Society were too small. My insurance didn’t cover cranial prosthesis (even though it would have been cheaper than one prescription) After special ordering, the order was mixed up and wasn’t going to be ready until one month before chemo was to end, I said forget it
I have been touched by complete strangers care.
I have the best Healthcare Team. They are associated with St. John’s Westshore/University Hospital. I wanted to go to University of Pittsburgh Medical Center where Frank was cured, but our insurance wouldn’t cover completely and I knew we’d be getting into the hundreds of thousands by the end
My General physician is Dr.Pete Gotsis, my oncology surgeon is Dr. Kristine Zanotti, my Ob/Gyn is Dr. Michele Belardo, my oncologist is Dr.Richard Chang.
Their support staff, their nurses are phenomenal, they’ve loved and taken care of me at the worst moments of my life.
I always said three factors saved Frank from the 3% survival rate he was faced with:
1. Early Detection
2. Great Healthcare Providers
3. The Best Prayer Chains/People in the World
I also learned in my previous experiences knowledge is power, but this time I couldn’t research my own disease, I always seemed to end up on the worst sites, the worst statistics, the horror stories. It was overwhelming, so I do my best to stay away. I even had survivors share the worst and unfortunately it was at the wrong time of day to reach out to my oncology team to help me with the information.
Best advice I received from a support group on the East Coast was,
“Pay no attention to those numbers. They’re five years old, you’re unique.”
Be grateful for everything, let others help.
Feeling alone, close your eyes and imagine all those past and present that love you and are thinking/praying for you
Try to find something to be thankful for each day, no matter how small. Sometimes for me it was “tomorrow is another day”. But I was always thankful for my family close and extended, (especially Frank and my mother who were always there) my girls for their love, care and concern and all my friends who would call and check without being asked. I have so much, I pray for those who have no one.
I’m not used to being on this side of the disease. I was always the problem solver, I was the caregiver, I was the researcher, I was the advocate.
But if I can help someone avoid some or all of the pitfalls of the C word I want to give back. Please let Loraine know and she’ll forward, we can speak candidly and confidentially.
I remember the one time I felt like myself, I was waiting to go in for chemo, at the reception window an elderly gentlemen came to the window to ask the receptionist how to get the coffee from the carafe. I told her I’d help him, took him over and demonstrated how it worked; it was so meaningful to help someone again.
You should have been reading about a lovely little get away at Punderson Manor . You should have been reading about tracking the ghosts of Punderson Manor and was anything experienced by our merry group and all being well you will in a later post.
You see we didn’t get to spend the allotted time at Punderson as the trip was cut short. Once again drives through the early morning ice and freezing rain to get to the emergency room to find what the monitors would tell us. I followed my daughter ( yes we had taken two cars- thankfully) as she and the children and my mother fought the terrible road conditions that morning.
I arrived at the hospital , through the emergency room doors , ushered into the cubicle- the identical beds , identical monitors , IV lines , chairs that made you sit up right – I flashed back to my son lying in similar rooms and bed at Elyria- EMH- the Cleveland Clinic, and MD Anderson- the smells are the same, the squeak of rubber soles on polished floors, low monotone voices escaping from surrounding cubicles , someone’s family members crying , some smiling , a groan as someone reacts to their pain.
My son-in-law, standing by the bed, trying to ease my way knowing that hospitals are the very last place I ever want to be and my penchant for “emotional incontinence” . I saw once again a face of someone I loved scared as to what the prognosis would be , looking for a comfort I couldn’t give, my stomach churning , holding on so as not to flee the worst place in the world .
I didn’t think of the cost, what the insurance would cover – how much each transfusion would be- would he be able to “afford” his healthcare- where would I get the money to pay…. you don’t….. you just want everything to be OK. The internal bleeding could the Drs. stop it , what was causing it- these were the questions on Friday morning..
I was not asked about insurance thankfully, that had probably already been done before I arrived. I would say in my “state” it was just as well – as I would not have been responsible for my answers or the manner in which they would have been given.
You shouldn’t have to think about if you can “afford” to save one you love- but it happens more than you may realize . This blog appealed to people just a few short months ago- Brad Anderson needed a liver transplant but first he had to come up with the cash – $100,000.00
His family and friends and local media took up the challenge and they raised the money and I am glad to say in December they were celebrating a successful outcome- but should a man in desperation have to beg for the money to save his life in this country- it is done every day- how many fundraisers do we attend so a child can live or get treatment- this isn’t a third world country or is it ?
Cash on Demand for healthcare - your life depends on if you can pay- can you afford THAT deductible? Time Magazine 4 days ago published an article
The story of a young man from Ohio going to MD Anderson in Texas for treatment of non Hodgkin’s Lymphoma – sound familiar ? Yes! my son also went that route
Because Stephanie and her husband had recently started their own small technology business, they were unable to buy comprehensive health insurance. For $469 a month, or about 20% of their income, they had been able to get only a policy that covered just $2,000 per day of any hospital costs. “We don’t take that kind of discount insurance,” said the woman at MD Anderson when Stephanie called to make an appointment for Sean.
Stephanie was then told by a billing clerk that the estimated cost of Sean’s visit — just to be examined for six days so a treatment plan could be devised — would be $48,900, due in advance. Stephanie got her mother to write her a check. “You do anything you can in a situation like that,” she says. The Recchis flew to Houston, leaving Stephanie’s mother to care for their two teenage children.
About a week later, Stephanie had to ask her mother for $35,000 more so Sean could begin the treatment the doctors had decided was urgent. His condition had worsened rapidly since he had arrived in Houston. He was “sweating and shaking with chills and pains,” Stephanie recalls. “He had a large mass in his chest that was … growing. He was panicked.”
Nonetheless, Sean was held for about 90 minutes in a reception area, she says, because the hospital could not confirm that the check had cleared. Sean was allowed to see the doctor only after he advanced MD Anderson $7,500 from his credit card. The hospital says there was nothing unusual about how Sean was kept waiting. According to MD Anderson communications manager Julie Penne, “Asking for advance payment for services is a common, if unfortunate, situation that confronts hospitals all over the United States.”
So what was the difference between Sean and my son Chris - I will tell you that even my son’s “trial” at MD Anderson was covered by the health insurance he had- his “wife” was a resident Dr. within the Cleveland Clinic - Angela (Lombardi) ritchey DO - well her insurance was a beaut- 100 percent coverage and no cap – they had no such worries – we were met with smiling faces and the VIP treatment.,
Had Chris been under his work insurance at the time he would have met his million dollar cap halfway through the stem cell transplant – I wonder what they would have done?
How do you face the loss of the one you love and still be reminded every damned month as the bills for the “failed” treatments come through your door as another Hodgkin’s fatality family deals with after the loss of their Hillary. Hillary fought with her dying breath for coverage – She had to fight the cancer and the health insurance potentates
You are first – before you get to the Drs. a commodity- you are an insurance number – you are a $ figure and a patient 2nd to the “adminstrative potentates” and can you pay- this in the land of :
“Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!
BUT make sure you bring your health insurance card and coverage !
Hillary in her short lifetime also published a book to help children understand cancer -
and I am sure the proceeds will help her family pay for her treatment the payments continue even though the treatments failed.
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.
All week long, I’ve felt the grief edging upward, through my innards, heavy- like concrete- filling my lungs, tears stuck like gum in my throat and bubbling up, spilling over into the world.
I read those words from Dr. Joanne Cacciatore and I identified with those words – like concrete filling my lungs. Every mother who grieves for the loss of their child has experienced that symptom- it causes you to take shallow breathes- it is a concrete mixed to perfect portions of love- loss- hopelessness- building a monument to grief.
My lungs feel like that most of the time – the sheer weight drags on your heart , somewhere in the midriff a cold pain spreads through your limbs , invisible hands of the monster of loss squeezes your throat without mercy with murderous intent and tears choke what little air you still breathe. You die a little , but then the body fights to live -grief explodes from you in a terrible birthing act and brings you to your knees.
Chris the words you said to me that last night in your apartment -
“Mum not being able to breathe is worse than the cancer”
haunt me still.
I wish – oh how I wish many things – I wish I hadn’t listened to “dr’s to be “ Drs in training and questioned more closely Dr’s in teams- insisted upon my own family Dr. being involved ( one I trusted) . How I wish I had been able to think, to react with my gut and my brain- I was in some unreal world where I wandered not understanding – waiting – numb- unable to function -as me. I see even now the faces of nurses , their eyes trying to talk to me – I know now what they were trying to say – that my hopes and dreams for you would not happen- kindly trying to lead me to the realization – I couldn’t bring myself to understand the unspoken. I finally roused from my netherworld to fight those that surrounded you , those who took control
- but it was too late – it was the day you died- too late………..
Oh! they ended up with the safe diagnosis ( given to them initially by a slip of a girl with a two-year residency under her belt- your wife – in that emergency room at the clinic. ) Ah! the trust of one of their own….. had they not been told H1N1 by her in the first place I wonder ………. but once again too late –
H1N1 on your death certificate . I always knew in my heart of hearts that was not the cause of your death – it was the convenient diagnosis- the eenie meanie mini moe team diagnosis-. Would the probable diagnosis have changed the outcome? Probably not. Oh! life insurances and stats were compromised with the H1N1 diagnosis- Drs. may have had to “rethink” their “treatment choices” – I am sure, but you would still not be here.
I have time to research , I have had time to question, time to look at records, time to read since you died- I have talked to Drs., specialists internationally, nationally and locally – gone over records – cause and effect of drugs and treatments – explored a world I was unfamiliar with – a world I wanted no part of and did not want to revisit.
In my opinion, the cure killed you before the cancer – your lungs turned to concrete – a concrete consisting of radiation , chemo drugs, time lines and possible cures. The human guinea pig and lab rat that you became may have helped someone else but not with the convenient H1N1 diagnosis – even though they did not cure- you are down in the “stats” as a success re the latest cure for Hodgkin’s Lymphoma -
Oh! too bad he died of H1N1
NO! it wasn’t H1N1 imho – you died of Acute Pulmonary Toxicity- your lungs turned to concrete and now so do mine with the Acute Pulmonary Grief………. and there is no cure for either of us .
ED NOTE: UPDATE FROM -MAD IN AMERICA
– a very worthwhile read
I think Dr. Joanne Cacciatore said it best in her Mother’s Day post of 2012
Mother’s Day 2012 is arriving.
With its arrival also the heralding of deepened grief and longing for countless bereaved mothers around the world.
These are mothers who, even decades after the deaths of their children, will weep for their beloved when they are alone- will pace the floors of their homes as their hearts literally ache in their chests- will still negotiate for their children’s lives – will grasp at something, anything in which to believe- and would sacrifice all they are for their children who died.
Grief is not a disease, it is not mental illness, it is not depression. It is, in fact, an expression of love. Grief can only be a disease if love is.”
What is Love??????
My son and I , when he was having doubts as to continuing his relationship with his soon to be wife, discussed love at length for hours one evening .
His question to me that night
what is love and how do you know you really love someone????? -
We discussed love, types of love and all its facets. Since Chris’s death I have learned something I did not know about love I do know, now , a mother’s love for her child does not die, does not lessen. A mother does not put the love and loss away to bring it out occasionally. The love is always there and undying love is the definition.
The American Psychiatric Association has been diagnosing those parents who grieve desiring them meet a love/grief litmus time test in order to enable the Major Depressive Disorder label.
have apparently failed a few tests of their own – from the Huffington Post.
Newsflash from APA Meeting: DSM-5 Has Flunked Its Reliability Tests- by Allen Frances
I am one of the ones that have been vocal and as honest as I can be about how this loss of my son, Chris, and this terrible journey, which stops time. Once before my “love” of my son was negated and called into question as I grieved for him . I explored the “note of narcissism” (my own diagnosis of this particular“good Dr.”) in the first Mother’s Day after the death of my son.
I was the recipient of a “note” last month from Dr. Angela Marie (Lombardi) Ritchey DO , it was meant ( in my opinion ) to cause me pain as Chris’ mother. The “note” came through the “mail drop” of my dead son’s belongings- how thoughtful was that? I am not sure why or what purpose she hoped to serve. Her particular mindset is not MY worry.
There was one sentence though that has caused me to ponder the meaning both from the usage of the English language but also the words “your intense love”
The whole sentence reads:“I think your intense love for Chris shielded you from getting to know who he completely was.
I explored that sentence in the rest of the post that Mother’s Day 2010 and ended the post with the following :
What , I wonder, was her “base line” for the definition of my “INTENSE love” I can only wonder if what seems natural to those that love and receive love unconditionally is not always understood by those who may not have had that experience.
What degree a mother’s love and should it be decided and negated by one who has never experienced it?
Cartoon Source http://www.myshrink.com/questions-medications.php
And now other “medical professionals”, those of the “American Psychiatric Association”, seem hell-bent on classifying me and others like me as in dire need of being “fixed” few days/weeks after losing love to death ( to be paid for by insurances etc ). Are we the untapped consumer source?
We should not, ethically or morally, medicalize grief. To do so is to medicalize love. We rarely mourn for that which we do not love
Should not the APA just medicate – just eradicate -”Love” because that is the underlying emotion that is the cause of the “afflicton” of all of we who grieve and are then classified MDD. You see Joanne is right those that don’t love don’t grieve- simple fix – get rid of love!
But to those that love and grieve be careful as to the path you choose because being diagnosed MDD can cause a ripple effect that may cause you to be even more depressed as to the consequences of such a diagnosis:
Because a person can be denied private health and life insurance if he or she has been diagnosed with a mental disorder;
Because parents who have been diagnosed with a mental disorder can lose custody of their children;
Because individuals diagnosed with mental disorders can lose opportunities for jobs and often suffer the effects of global discrimination;
Because a diagnosis of a mental disorder stays in your records, despite the fact that many clinicians may not disclose this;
and some of those drugs can be dangerous too -
may well up your chances of suicidal tendency..( although the warnings for increased suicidal tendencies in children and adolescents remain- apparently it is perfectly safe, so they say, for those that are depressed as an adult) I wonder why that is ? could it be that after the first warning labels appeared apparently sales dropped significantly enough for it to make CNN
Should investors forget about the antidepressants? Perhaps the market — estimated at $10 billion — has reached capacity. But how can 19 million depressed Americans possibly be wrong?
“Any antidepressant drug ends up being a $2 billion drug at least, but we’ve seen the depression market really slow down,” said Jon LeCroy, analyst for Natexis Bleichroeder. Antidepressant sales grew just 3 percent in 2005, said LeCroy, down from 4 percent growth in 2004 and 5.5 percent in 2003. “It’s a big, [but] lackluster market,” he said.
ERRRRRRRRR hang on a minute isn’t that the very thing we are trying to CURE… depression and suicidal tendencies???? …
Show me the money and I will show you the reason for the classification of MDD by the APA – of course I would probably be “pigeon holed” diagnosed with paranoia tendencies due to my “grief” and lacking rational thought-
So what do you think? does “classifying yet a another group as MDD” therefore enabling more drugs and insurance payouts benefitting the drug companies. help those that grieve for their child or help “the BOTTOM LINE” ???????
UPDATE: The latest FDA information on the drugs mentioned can be found here
As I stated in Part two – reliving the journey of my experience with Doctors/ hospitals – the medical profession and what ultimately became our tragedy in the loss of my son - Christopher Ritchey – I knew writing the series was going to emotionally take me to places I may not be strong enough to go . So, like a marathon runner in training to get to the main event, I decided to start at the beginning of my experiences hence my memories of a three-year old.
During the course of my journey of grief at the loss of my son I have met so many people , especially mothers, who share my road. I was introduced to Joanne Cacciatore, PhD and her blog where “those in part of the “healing profession , are trying to pigeon-hole and make grief just another disease to take a pill”
and move on. Some of the drugs prescribed for this “illness of grief” can be found here : http://www.drugs.com/condition/depression.html
Depression is big business for the drug companies- I “STRONGLY” suggest you check and see the side effects of these drugs- but Hey! not to worry if you suffer a few – that is OK – I am sure Doctor MD/DO will have another drug in his repertoire to counteract those symptoms and so it goes…..
All types of media from print to electronic now bombard you with “cures for your ills”
Ask your Dr. about XYZ drug – you can live a normal life – just ask him/her about OUR drug.
The snake oil salesmen of the 21st century meet our with our need to hope and be well and we rush to their call with our little insurance cards in hand –
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
Important Safety Information About HUMIRA® (adalimumab)1
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.
ED NOTE: OH OK so according to Humira we put our trust in our Doctor- how many Dr’s ( I bet yours is ) are part of the pharmaceutical sales onslaught- you have seen them with their suits and cases as you wait in the world’s waiting rooms for your turn with the Good?? Dr.
From the Princeton Review – emphasis mine
Pharmaceutical sales is a fast-paced, high-turnover business that rewards assertiveness, persistence, and knowledge. Pharmaceutical sales representatives spend most of their business time on the road, talking with pharmacists, hospital personnel, physicians, patient advocacy groups, and even retirement homes, increasing the visibility of their company’s products and the volume of their sales. “Sell sell sell learn learn learn sell sell sell,” wrote one sales rep, who included his business card with his survey, in case we wanted to purchase any pharmaceutical supplies………………
………..For many, a significant portion of their income is riding on their ability to get the product into the hands of the consumer. So, why is this job so addictive? Perhaps because the “EXCESSIVE PROFIT MARGINS” of many brand-name pharmaceutical products can mean enormous commissions
and for your further reading -
Confessions of a Pharmaceutical Sales Rep
•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.
During my journey, I have met on-line the mother of one of the “SOME PEOPLE”- a mother who trusted – who put the most important person in her life – her child- her son into the hands of the snake oil salesmen – they trusted their medical practitioner to help her son.
This is the face of “SOME people” – he is the reason there is a disclaimer- his life given – His name is Maxx Wendell- a young man with an oh so bright future- a young man full of life, humour and love. WE should all pay attention – because we are the “people” who may also end up as disclaimer as the money rolls in .
His mother, Lisa, wrote a comment on this blog which I have reprised below. Lisa fights through her grief and terror so that no other mother has to walk the path of “induced death” – the some people side effect of this drug . As you look at the side effects of any drug and see some cases , some instances, some deaths remember there is a face behind those side effects who have paid the ultimate price for pharmaceutical profits- Lisa Wendell and her family are “some people”:
For those who read your blog, I am the mom of the son who was prescribed a combination of immunosuppressive medications (what are called biologic TNF blockers) to keep his ulcerative colitis, a non-life threatening chronic autoimmune disease in remission. As a result, Maxx developed Hepatosplenic T-Cell Lymphoma, an aggressive, deadly cancer that killed him in 17 weeks. He was 21.
We were NOT informed of the dangers of this drug precisely because the makers of the drugs (Johnson and Johnson/Centocor and Abbott) had not yet labeled the medication with Black Box warnings advising of the 6 fold increase in risk for this disease in a pediatric population of young men between the ages of 17 and 24. In fact, we were specifically told that the risks for any serious side-effects, including Lymphoma were so low as to be virtually the same occurring in the general population. The combination of the doctor’s ignorance/arrogance and the out and out cover up by the drug industries of deadly side effects (levels of corruption that are unimaginable and occurring across the board all the time with regard to all drugs) killed our boy. Thousands of people a year lose their lives so drug companies can reap profits we can scarcely imagine.
One of the drugs, Remicade, was labeled shortly before he became ill. By that time he was no longer taking Remicade but had been prescribed another medication, Humira, with a different “delivery system” (self-injectible vs. infusion) that was supposed to have a better “safety profile.” Essentially, all this turned out to mean was that the Black Box warning had not yet been required on Humira. As of April, 2011 Humira now carries this warning as well.
In the meantime, my son is dead. Doctors are still prescribing these medications to people with a variety of autoimmune disorders including Rheumatoid Arthritis, Chron’s, Ulcerative Colitis, and refactory cases of Psoriasis. In the four years since Maxx died, another 41 people have been reported to have died from HSTCL.
We cannot know if they were ever told by their physicians of the dangers, however, we were not informed. We did not consent to taking any risks. Never. We would never have taken such a risk with Maxx’s life. We asked repeatedly about the safety of both Remicade and Humira and were always told the same thing. The drugs are safe. The real information was supressed. Deliberately and for as long as possible to allow the drug makers literally years to make billions. Humira is one the top three selling money making drugs on the market for its manufacturer. What are 40 deaths when compared to billions? The true story’s behind drug company cover ups, lies,marketing scams, and greed are now common knowledge.
I will talk to anyone who is interested in knowing more about Maxx’s story and I welcome contact with other parents who have lost children to medical “fraud” and terminal disease.
I also urge anyone taking drugs for any chronic condition to thoroughly research the medications you or a loved one have been prescribed. Keep reading, keep asking, keep pestering, never stop. Keep fighting to get the information you need to make an informed decision. Our family is not stupid. Maxx was brilliant. We were duped. He lost his life, and I lost my heart
Only those of us who have walked the path of such utter confusion in the medical maze and have lost our reasons for being know how gut wrenching and brave it is for Lisa to write of her journey- she is still giving in the name of her son – and trying to save others from the depair and terrible agony of such a loss- my heart and “knowing” are with her….. LISTEN to Lisa …….. we could all end up as the legal disclaimer one day as one of the ………. “SOME people”