April 3rd – sample of life – Chris Ritchey

Breath of Life – Celtic Knot – Chris Ritchey

At first, after you died I girded myself for the arrival of the mailman – sympathy cards, notifications in your name, even the ones from the monuments people wanting us to purchase you a headstone- at least they recognized your family should have a say. As the months disappeared into years pretty much the only mail for you would be the yearly invite to a “four-wheeler” event.

Last week however, Monday , found me opening your letter calling for you to submit work created between January 2015 and December 2016 for AIGA Cleveland . My breath was only sucked out of me for just a few moments and although I was in a foul mood and very touchy for the rest of the day, causing everyone around me to tread on eggshells, I managed.

Then the mailman knocked on the door three days later with a registered letter from the Cleveland Clinic – I can’t abide that conglomerate of medical management http://my.clevelandclinic.org/ This letter was from the Andrology Laboratory and Reproductive Tissue Bank.
Apparently they were updating records and it came to their attention you had passed away “our condolences” (written as an after thought) but we need to dispose of what remains of your son’s life ( my words) hereto known as the “sample” .

I was confused, incredulous , not sure what I was reading – yes I remembered you, on doctor’s advice, had banked sperm before the chemo. I had wondered weeks after your death what would happen. I didn’t do anything because since the Lombardis and the then your wife – Angela Ritchey ( now Dr. Angela Murphy- http://my.clevelandclinic.org/staff/16147-angela-murphyespecially Sue Lombardi ,had made ALL the decisions as to what would be happening with you, my son and your mortal remains, with no input from his family – they would have seen to this as well. I hadn’t realized you had designated me in this instance.

And here it was -the Clinic apparently had not “disposed of ” (their term) the sample upon your death as contracted . Now, I have to make the decision to call them re maintaining the samples – should I do nothing they will commence the disposal on what would ironically be your wedding anniversary !!!!

I read and reread the letter , my gut churned, my mind ran amuck – this planet still holds your life essence and the cavalier Clinic wanted to tell me they were once again in disposal mode.

Angela , Sue and Tim Lombardi

I cried ,gasped for air, memories became reality once again in the ensuing hours. Everything came rushing back – emotional incontinence, anger , disbelief, pain returned full force.

Thoughts of what could be , what should have been, pulling the plug conference in that damned hospital – stony faced Lombardis – removed from the emotions of your death – sitting at that conference table looking like they were smelling bad fish and hoping against hope I would agree to your being taken off life support. Inconvenient, if I wouldn’t agree as Sue Lombardi had already picked out the “coffin clothes”. https://thatwoman.wordpress.com/2010/10/14/an-open-letter-mama-sue-lombardi/

I wasn’t thinking straight –

I could get legal advice about maintaining the “sample” – you see to me was more than a “sample” it was my grandchildren that would never be- the life essence of my son and yet there was hope still– surrogate mother ran through my head- what would that cost? and then the darker thoughts of what did they mean by “disposal ” did they dump your “essence of life” into medical waste, the toilet , down a sink? My mind raged , bled and remembered……

Logically I know, you had signed the contract your “sample” should be “disposed of” after your death, so I believe that is what you wanted. Even if I could find a surrogate – it would be sheer selfishness on my part to bring a child into the world when I am surely heading out of it before they would be grown and finally you had a blood cancer when the “sample of life” was taken, I couldn’t take a chance that any child born would have a chance of cancer.

I haven’t responded to the Clinic as yet- although I know I will have to but it is hard to once again have to pull that plug……….

I love you ………

Artwork Chris Ritchey

August 3rd- Alarming- Chris Ritchey

Photo by Chris Ritchey July 12-2007

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” .

photo Angela by Chris Ritchey

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..

…… but the cold shiver was a warning of what was yet to come.

This July has been no different- little Tetley had to be put to sleep . He didn’t suffer and was running around until the very last.

Artwork Chris Ritchey Face Book page

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
https://thatwoman.wordpress.com/2016/07/03/july-3rd-pastpresent-all-the-same-chris-ritchey/

March 3rd – dilemma – Chris Ritchey

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 !
https://thatwoman.wordpress.com/2010/04/20/i-didnt-know-my-son-chris-ritchey/

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 ………….

July 3rd – the cooler bag – Chris Ritchey

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 .
https://thatwoman.wordpress.com/2010/04/20/i-didnt-know-my-son-chris-ritchey/

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.

Angela , Sue and Tim Lombardi

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……..

May 3rd – the book- Chris Ritchey

I was supposed to write a book telling of the “love story” as requested by your then wife- (Angela Marie Lombardi – Ritchey – now Angela Murphy DO ). http://doctor.webmd.com/doctor/angela-murphy-do-1b9198d9-dcd4-e111-9faf-001f29e3eb44-overview.

At least that is what she requested of me after your marriage, sitting on the couch, in your apartment . You were supposed to illustrate the “love” story . I am sure the expected heroine figure of Angela, as she imagined herself at the time, will be a disappointment to her in this actual story of undying love.

I have started the book” and yes your illustrations are very much a part of the story. I have come undone as I get to the chapters of the dying days. For weeks I have struggled to get past those dreadful days to get to the place I need to be to “continue ” your story as you continue.

I have even tried to leave those days for later and begin the chapters that need to be shared but I am unable to put fingers to keys . Why ? – will become apparent if I ever get this book finished . The journey for me has been one of seeing the best and the worst in humankind, the lies, deception, cowardice , greed , the medical community at its worst and best and great love, compassion , strength intertwined in the pages of NO LIMITS – I am limited by me…….

excerpt – NO LIMITS – Forward

I have hesitated for months, even years, to tell the story from my self-imposed box. I have written millions of words on my personal blog in the years since my son died. http://www.thatwoman.wordpress.com I have written his story, I have opened myself and my innermost thoughts and feelings. I have told the tale of cruelty, searing pain and thoughts of suicide. I have exposed myself in ways not many would without fear. So then, why is it I hesitate to share ALL of our story, a story of continuing love, strength and astonishment? What could be so dangerous in opening up a world of hurt to my loved ones? Why would a love that continues cause such angst and trepidation in those of my society?

Society? Oh they can’t hurt me, I am beyond their pain, their laughter. The sound of laughter to one who rarely laughs is just pleasant echo of what once was. There should be laughter in the world, I do not begrudge laughter or being the source of humor.

I love you my son……..

Sept 3rd- Confidence- Chris Ritchey 2014

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.
https://thatwoman.wordpress.com/2010/09/25/long-time-passing-gone-to-fighting-part-6/
Their young lives changed forever by a few words spoken on that September 3rd .
http://www.warhistoryonline.com/war-articles/transcript-sound-neville-chamberlains-declaration-war-september-3rd-1939.html

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-

https://thatwoman.wordpress.com/2014/08/21/the-birthday-and-those-between-chris-ritchey/

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”

. the “confidence artwork”

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…
https://thatwoman.wordpress.com/2010/11/23/symbols-lost-and-never-to-be-found-chris-ritchey/

”
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 .

Other self by Chris Ritchey

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

Humira -auto-immune medicatons check the box

selfportrait- Chris Ritchey

ED Note
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” .

https://thatwoman.wordpress.com/2014/05/06/humira-the-black-box-and-you/
https://thatwoman.wordpress.com/2013/08/12/black-box-warnings-take-heed-humira-etc/
https://thatwoman.wordpress.com/2013/08/07/the-faces-of-the-black-box-warning-humira/

– 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.

http://projects.propublica.org/docdollars/
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.
http://www.hc-sc.gc.ca/index-eng.php
Also, here are two excellent websites.

http://www.worstpills.org/aboutus.cfm
https://www.citizen.org/hrg

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.

Finally, don’t take any one doctor’s word on the safety profile for this (or any, drug). You need to gather as much information as possible on your own so you can present your concerns up front.

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.