Posts filed under ‘Doctor/Physician’
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
The last couple of months have found me less than healthy, thanks to two little boys. Doesn’t matter how many times you wash your hands, hugs and kisses from the “carriers of cute” have now given me at least three different viruses.
Just when you think you are turning the corner you are laid low by the next ” home from school dreaded lurgy”. It has not been pleasant .
Every racking cough reminds me of you, Chris – those nights in the guest room of your apartment when I could hear your terrible gutting coughs – your lungs trying to expel the cancer that had found its way in, to no avail. Each bout of coughing went through me like hot knives.
I will never forget those nights – you choking on your own body. I would lay there, wanting so badly to help , to get you a drink, anything to ease the torture to take care of my son, as best I could.
But, you had a wife in that room and I waited for the sounds of comfort for you- they never came . You would eventually get up go to the kitchen , or to the bathroom to get the medicine to help you sleep. I used to stay overnight because your appointments were early in the morning at the damned Cleveland Clinic – the place of numbers before names- the cattle call of cancer.
I knew it would only be a matter of time when I could bear it no longer and I would have to reach through those walls and take care of you, causing you even more distress from an interfering mother. It was so bad I couldn’t stay in that room doing nothing to help you . So rather than stay I would get up at 4 am at home and drive the 50 minutes to your apartment to go with you to the tests and appointments . It was easier than the alternative, which was so hard to bear.
It was very, very difficult for me knowing what to do when I was now the “mother- in-law” as well as the mother. In hindsight I would have ignored protocol and taken care of you as I should have done on those nights. You should’ve been my first consideration !
I failed you more than once. Every time I have been hit with racking coughs these past weeks- it was you I thought of and your dying time – my heart and mind are still with you as well as my guilt. You are never far from me ………….
Another day , week, month, year- I have learned the navigation of the path of pain- I know now most of the emotional laybys , the pitfalls that can swallow you whole . I have become aware of them as I travel this way of grief. Oh! sometimes, even knowing they are there does not save me from tripping and trembling as I go forward in this life.
Nana, she of the wonderful pastries and food of love, had made a sausage pie for friends who were visiting. We had to take the pie and accoutrements to Catawba last week. The pie needed to be kept cool on the journey but a big cooler wouldn’t do. Nana, who has pretty much taken over the kitchen since she moved here, knows where everything is and pulled out a plastic cooler bag. My heart ended up in my throat once again , I must have turned white, because Nana said
” are you alright what is wrong ?”
That silly, cheap, plastic cooler bag, I had forgotten its very existence. I never knew where it came from originally. We weren’t into Nascar – but there it was . They say your life flashes before your eyes when you drown- all I can say is your life flashes before my eyes every time I am confronted with an unexpected object , sight, sound that was you.
As I looked at that bag, Nana washing it out readying it for her pie, I remembered the orange slices and water it had kept cool for all those soccer games. I remembered grabbing it out of the cupboard on the morning you got married. I hated that day, my beautiful son dealing with chemo and the diagnosis of Hodgkin’s but still filled with false hope.
It was a record-breaking heat that June day, and I knew the ” family of the bride” would insist on the plethora of pictures being taken, driving here and there in the limo- I was so worried about how you would be able to handle the whole thing feeling ill as you were. – The Lombardi , Vyka clan were all about those pictures- still are.
I grabbed the bag threw in some of you favourite sandwiches and water , and orange slices. I knew you were feeling ill because the Chemo had been on the Thursday and its poison was killing ( supposedly) the cancer cells and your good cells- it knew no difference. I put the bag in the limo.
You hugged me at the reception and whispered in my ear –
I gave the bag to Nikki , she has it, thanks mum – couldn’t do justice to the sandwiches but the orange slices and water went down well thanks for thinking of it.
When the cancer came back and you couldn’t eat and the next round of “treatment” was prescribed I would come to sit with you in your apartment so Angela -your “bride” -could continue working- ( although I later found out that was not always the case as to her whereabouts). It didn’t matter to me then or now where she was – I know the truth of her and it is dark!
I just wanted to take care of my son, to try to keep the promises I made to you when you were born-
” I won’t let anything happen to you- I will protect you”
That cooler bag went with me every day for weeks whilst you were having your double stem cell transplant . You couldn’t bear the smell of the hospital food- the smell of the plastic covers keeping the food hot disgusted you. I would take a meal up in the cooler bag, your lunch and dinner, every single day to be heated in the hospital “family room” microwave. The orange whip, Nana would make you , so cooling ( full of calories) would slide down and not burn your mouth that was blistered by the chemo.
The last time I used that cooler bag- a phone call from Angela as I was shopping at KMart
” Chris said you were coming to spend the night should I get something for supper – she had to work that night”
– I was bewildered, as I was actually in Kmart getting new bed linens, as I believed you to be coming home for the weekend- after that disastrous and stupid idea of Angela’s stating you could drive back from Houston .
I was puzzled- she hadn’t said anything about working- You never mentioned to me in your morning phone call about needing me to come- just that you wanted to come home for the weekend . Oh! later I found out she was not scheduled to work that night- she requested to work at 4 in the afternoon WHY? . – Hindsight is 20/20
I packed the cooler with your favourite dinner and we ate together one last time in your home. You went into the clinic again the next morning – dying- never to come home.
I forgot about the cooler bag, left on the kitchen counter in that apartment of deceit as I followed the ambulance to the Cleveland Clinic ER.
I never thought of it again until we received 4 months after your death ( via the funeral home) the box of
“throw- aways”… because that was what they were- from the Lombardi Clan and Angela( now Angela Murphy DO http://my.clevelandclinic.org/staff_directory/staff_display?doctorid=16147 ) along with her disgraceful, lacking in any sort of compassionate thought, letters- to your family who were raw with grief.
In the bottom of the box was the cooler bag -not good enough to keep obviously or to give to their charities . I couldn’t throw it away, it had been such a part of those months – so I stuffed it in a little used kitchen cupboard until ….. Nana’s sausage pie………….. and once more your last part of life flashed through my mind, the anguish, loss of hope, cruelty, the anger that has kept me upright and your last words .
I love you Chris- I will not forget you……..
The day war was declared- your Nana, a survivor of living history,remembers that Sunday well like it was yesterday.
It was one of those defining moments in life. A war, that saw your grandfather have his youth , innocence and joie de vivre ripped from his being , not to ever fully come back to him.
Their young lives changed forever by a few words spoken on that September 3rd .
Your life was changed forever and ended by words – you have cancer
I know that I have changed but I hadn’t realized how much. Last month a gift- a VHS tape – found on the floor of the garage-
Your dad brought in the bag of VHS tapes and started to play them. There you were, once again, your childhood played out in the pool, on the soccer field , rowing boats , Christmas morning, skiing laughing and loving with us
I still can’t watch most of the tapes , it is like trying to breathe underwater. Looking at the dance tape of Nikki with Braedyn and Gavin – little Braedyn glued to the screen as his mummy danced, Gavin telling his mummy – you are beautiful
I saw myself , the MC of the event taking center stage – I was so confident, knowledgable , open to the audience , carefree, laughing, smiling and welcoming. I saw myself in a swimming pool with our family, your sister and friends racing the lengths of the pool , the music of laughter rang once more in this house as the tape played and those voices of summer came back from the past. .
And then a Christmas morning , the living room which held so many Christmases, your Nana and I sitting on the couch surrounded by presents , the noise, everyone talking at once, the puppy – that was Sheena , the paper wrapping making a pile in the center for Sheena to attack. What struck home with me was the laughter and conversation in which Nana and I were engaged. We didn’t stop talking and laughing – I was confident enough to make a complete fool of myself with the most horrendous pair of earrings. I still have those damned earrings , but I no longer have you or the me that I was.
I knew I lost ME when you got cancer and died- but I hadn’t realized how much of me I had lost . I was looking at another person, not recognizing her at all anymore. She died too and I grieve for the faces of life caught in a web of video. I grieved for the loss of laughter, happiness and confidence. I am so different , no longer the daughter, wife, mother , friend and neighbor of before.
I am reminded by the collage that will play such an integral part of the book I am writing “of you”
Confidence Gone– I opened up to you and my lack thereof – in Texas on another September day as you wrestled with cancer and untruths- set in a holiday setting of palm trees and sparkling waters – I spoke to you that day – unsure…
You see when a son marries he brings into his life another woman- it is very difficult in the best of circumstances for a mother to sit back and watch decisions being made that in some cases I did not agree with in a normal situation- this terrible situation we find ourselves all thrust into makes it doubly hard. But I have deferred to you both and to her “medical expertise” with this obscenity of Hodgkin’s that has engulfed us. It has been one of the hardest things in the world for me not to interfere or to put in my two cents. There have been times Chris, when I have doubted my own abilities and lost confidence in myself – I have gone against my own gut feelings and yet there is a voice that tells me to still be protective of you .
and so I continue – no longer me – no longer with hope, no longer belief in a greater all knowing supreme being, no longer happy, welcoming and confident just a transparent shell of before…. whose smile only surfaces when two little boys break through the endless night of losing you…….. the other self
Every single day this blog receives searches looking for answers and information on Humira and other auto- immune medications. The information on this blog has been garnered not from the medical community, the drug sales force, the commercials but from the mothers of those who are the faces of the “black box warning” .
– No one wants another mother to share their pain. Graciously in the midst of their own suffering they have answered emails sent through this blog and elsewhere to advise from their own personal experience- the following is one such response to those that search.
You are right to look for information about Humira, and any other kind of powerful auto-immune medication–and there are several on the market today of similar biological make-up. In addition, there are other drugs that are frequently prescribed in combination with these auto-immune drugs (a protocol called recombinent drug therapy) which when taken together, can have additional serious (deadly) adverse side effects. All of these meds are/can be very, very dangerous, but every situation and individual is different.
If you are concerned, it will be entirely up to you and/or your family to do the appropriate research before you make a decision one way or another to take these kinds of medications.
Please, DO NOT waste your time contacting the sales reps for the drug company. They do not know, and WILL NOT tell you anything even if they do. They are not research scientists, doctors, or experts in anything except how to sell a product and make a commission.
Unfortunately, it is probable that your doctor will not know much more since they, too, purchase the meds from these same salespeople. Nor can you assume or expect a pharmacist to know any more about the dangers of these drugs than what is included in the package insert they dispense. The bottom line is no one can give you information unless it has first been provided by the drug companies and this is precisely why we are in such trouble.
I strongly suggest that you do as much research as possible about any auto-immune medication being prescribed for whatever your particular condition might be. Humira and other similar medications can be, and are used safely by thousands of people, but not everyone.
You may be fine with this medication, but it would probably still be a good idea to
1. find another one or two doctors for second or third opinions.
2. Ask as many questions as you can about length of treatment and expected outcome.
3.You should also go online to the FDA website for information about Humira (and other auto-immune drugs) and look for material specifically regarding adverse events. You need definitely to do this, if you do nothing else.
Any information about dangerous side effects for these drugs will be listed there. You will not be able to get this information in any format that is intelligible, providing you can even find it, on the label.
It is interesting to note as well, that Canada’s equivalent of the FDA is often years ahead of the U.S. in terms of issuing safety warnings for a variety of drugs that are freely prescribed in this country without a second thought. I would suggest that anyone with concerns check Canada’s governmental health website.
Also, here are two excellent websites.
Do a thorough search of your condition and its drug treatment in the professional medical journals. I cannot stress this enough. This means you will need the help of a librarian, possibly at a University, school, or hospital who will have electronic access to a wide range of peer-reviewed serials and/or medical databases that you will not be able to find online on your own. This is important because a lot of what you can locate through a Google Search will not include the kind of information you will find in peer-reviewed medical journals—which are ONLY available at a medical (hospital) or university library. And it is this specific information you want.
The important thing is not to panic. Do your homework and don’t rush into anything before you feel as comfortable as possible with your decision. Our sorrow is a result of not being fully informed (warned) in advance of the dangers associated with these meds–because the information was not made available either to the general public or prescribing physicians until years after my boy died.
The bottom line really is ask questions about everything, do your research and if you feel uncomfortable with any kind of vague response…be cautious. Ultimately, you will have to make a decision, but an informed decision is absolutely necessary.
Consider all possibilities, including NOT taking a drug and what that might mean for you as well. Sometimes, horrible things happen regardless of how much you know and the most carefully considered decision. Sometimes, all that we can do, and have done, is not enough. Sometimes, there is no other choice–taking a particular medication is the lesser of two evils (disease vs. treatment). But, there is everything to be gained by being fully informed about ALL possibilities/options before you put yourself or a loved one at risk.
Two years ago I wrote the following post as part of a series on drugs and Doctors. I have been unable to write further about my own medical journey on the cancer road that dead ended with he loss of my son. I receive searches every day on Humira – nothing has changed not the commercials or the hype -it is time once again to remember those of the black box warning ……
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”