Posts filed under ‘medical’
Every time I scroll down on the right side to log in to the admin section of this site I watch as the years , months, days of posting of my life on this blog slide by. The dying days still there , the crushing phone call that started all the pain, the hope, the horror and the vindictiveness of the days after your death.
Another 1st week of November – Houston – the time I dared to breathe- it is there chronicled
“Yesterday was the first restaging of my son after having 6 infusions ( one a week with one week off) for the drug SGN35. The scans have shown clear– he is responding well so far and although he is having trouble with some of the side effects – it looks like the drug is working on the Cancer. “
How untrue that was because a month later you were gone and your remains and any dignity associated with death snatched by selfishness and control by those who never really knew you.
Each month on the third I write about you , it is my therapy, it is my way of telling your story that you lived, were loved unconditionally, made a difference. You won’t go down in any history books, you are all but forgotten and “re written” by “the others” and of those that called you “friend” but you existed- you changed our world, you were loved beyond all tears. That love grows it does not dissipate in a “do over world” of some. My anger doesn’t dissipate.
Some might think I am crazy, crazy in my grief, that could well be. I know this grief that fractures, tears at one, opens wounds daily, will not be denied, anymore than the love of my son can be denied.
I carry within me the six basic human emotions ” happiness, sadness, fear, anger, surprise and disgust.” but to those that have lost a son or daughter mere “sadness, anger ” is not adequate in its description , the fear felt as the dying days were lived through is an abomination in its simplicity.
We are changed, emotions magnified beyond all knowing, unless you have walked where we have walked, reached out helplessly to anyone, anything, any god, the stars , screamed at the enveloping darkness that comes with the terror of knowing the hope is gone you will never understand . We are undone……
And yet it is love that feeds this terrible ache of missing , a love not waning , not forgotten, you my son still have a story to be told and I am trying to find the strength to tell it, a love that transcends the veil.
This is a guest blog post by my wonderful friend – Paula Tobias- Paula has been fighting her own battle with Ovarian Cancer –
How are the Department of Defense and Ovarian Cancer connected?
When I read this yesterday I was in one of many daily Pain moments; you know, on the scale of 1 – 10 (10 being the worst) I was a 9. The weather and more importantly the surgery, chemo and subsequent meds, tests, x-rays and PET/CT scans I believe have something to do with the agony dealt with on a daily basis.
The Department of Defense has funded innovative biomedical research programs for years that impact troop readiness. The Ovarian Cancer Research Program was added in 1997 and has since been funding research primarily aimed at finding an early detection test and better treatments for ovarian cancer.
Finding an early detection test for ovarian cancer is of critical importance to the military. Currently, any active duty military woman with a suspected case of ovarian cancer must receive her treatment in the United States (due to the availability of specialists here), so correctly identifying women that either do or do not have ovarian cancer is of critical importance to the military. Over the last five years alone, over 2,600 military women have had a suspected case of ovarian cancer. “
Senator John McCain will be adding an amendment to a bill in the Senate that would strip many of the research programs run by the Department of Defense, including the $20 million for the Ovarian Cancer Research Program(OCRP). The OCRP funds $20 million in innovative, high-risk, high-reward ovarian cancer research each year.
Senate staffers are calling this the biggest threat to medical research in 20 years.
I immediately called my Senators and left voice mails with my history. It took a lot to maintain composure while doing this and as soon as I was done, Frank (my loving, caring, patient husband) came in from work and surprised me. Well I surprised him with a burst of tears and language a soldier would blush hearing. At the end of that tirade I said, “Do you think the Senator would be asking this if it were his testicles at stake?”
I support all battling their cancer diagnosis, patient or family. I volunteer at my Oncologists office to empathize with those. I try to offer hope and comfort.
• Click here to send your Senator an action alert email that will tell them to oppose the McCain Amendment.http://cqrcengage.com/ovarian/app/write-a-letter?0&engagementId=108520
• Call your Senators and tell them to oppose the McCain Amendment
Please help and pass along this information and if we (Frank is still my miracle -13 yr. Pancreatic Cancer Survivor) can help anyone with their Cancer Battle, contact Loraine and she’ll connect us. Paula Tobias
ED NOTE: Whilst looking for the date of the vote I came across the following – it seems McCain’s amendment will not only effect Ovarian Cancer funding but Prostate Cancer funding as well –
Senator McCain amendment might kill Prostate Cancer research funding
Again and again and again Senator McCain (R-AZ) has attacked the Congressionally Directed Medical Research Program (CDMRP), which for PROSTATE CANCER has been among the most productive research vehicles we have to conquer PROSTATE CANCER.
It is beyond my understanding why he has taken up this vendetta. Every year he is our biggest enemy, trying his best to stop the great progress we have made. As usual, he is at it again!
Senator McCain is a major advocate for funding of the Defense Department, but he seems not to understand that the money that flows to the CDMRP does not take one dollar away from our defense budget. The money that flows to the CDMRP is over and above any budget dollar that will go to the Defense Department. So, why the vendetta against the CDMRP, I cannot explain it.
January 3rd- All over this planet people are starting this year of 2015 with goals- losing weight , spending more time with family, giving up smoking etc. My goal, is to be able to sit in the chair in the den long enough to write my 3rd of the month post for you my son. Not to do so would be , for me , breaking faith with not letting the world forget as so many in your life have already done, that you existed were loved and made a difference.
Without going into too much detail, I have had chronic pain for a few months. First the drugs were tried and they took care of it so it was manageable for a few weeks at a time but then more and stronger were needed. I have learned through your months of “hospitals and doctors ” more negatives than I ever wished to know about the health care system and some “professionals and hospitals”. Because of my life for those many months watching and seeing the outcomes I now trust only my instincts , my intelligence and my own research.
Yes that is right Chris, the one thing I learned is that I should have taken more charge of what was happening to you- I didn’t. Would the outcome have been the same? In all probability YES but the pain of our journey would have been lessened and hope would not have been sold “wholesale” for as long as the insurance paid and you would not have been Cleveland Clinic “lab rat”.
As I researched and interviewed Drs. I refused to be sent to anyone having anything to do with my dreaded Cleveland Clinic or doctors that took their residency under a certain Program Director at South Pointe Hospital –
I knew too much about that aspect of Dr. training from personal experience.
You would be amazed at the faces of potential health care professionals when I interviewed them. I am sure a couple were getting out the “white coat” for me. But remember this is my body , my choice, they are not gods, just people earning a living in the health care industry and not all doctors are of the same level. Putting a MD or DO to their name doesn’t make then all-knowing or of more than a “passable” expertise ! You and your insurance are paying for their expertise and yet so often we turn ourselves over to people we don’t know or know very little about or who know about you and say “save me”. You trust in their ability or the ability to refer but to whom?? You have rights as a patient and I now choose to exercise those rights.
However, I have managed even with my “outrageous to some” criteria to find a few wonderful doctors, and two very special hospitals, small enough to know my name and to whom , I and my family are people and not just an insurance number or the next condo in the islands payment .
One, St. John West Shore http://www.sjws.net/
has literally saved my husband’s life twice in the past 18 months and have treated my strange proclivity’s with patience, caring and understanding.
The pain worsened , I managed with drugs and hot water bottles and a lot of understanding from family and friends for the two weeks it took for the “insurance” to tell my doctor it was Ok for the next step.
Every time I filled the red hot water bottle , too hot for my bare skin, I thought of you the hundreds of times the five hot water bottles we filled in Texas as you went through the “trial” with no one but you and I. The number of scalding hot baths you took every night to ease the pain in your body. You never complained to me I know you didn’t want to scare me , you were “eating pain pills like candy” I knew you were just trying “to be”. I watched the pain envelope you but the phone would ring and you would answer in a voice so strong so as to hide the agony you were going through.
December 17th found me having the first procedure which went well, in fact better than expected and for 10 wonderful days I had only very slight discomfort- the pain forgotten as I got through Christmas. I was waiting for the procedure in the operating room and the anesthesiologist as he stated ” you will feel a little burn then nothing”- I remember thinking
I wish you could make me feel nothing! I wish you and your anesthesia had something to erase this horrible debilitating grief( that you are unaware of as I lay here)
But just like the tsunami of grief that is held at bay whilst life continues, so the pain laid low for a bit roared back into being . It came back after departing for a just a brief while,- contained – only to break through the medical barrier stronger for the respite as my body probably was doing more than it should without the warning of pain.
New Years Eve, found me once again laying on the table waiting to have my misery relieved. I have in the past months learned to live outwardly not showing for the most part the grieving mess I really am- the powder and paint of normalcy painted on like a mask every morning.
This time although I felt nothing due to the anesthesia and how that works is a mystery to me and also to others
” Despite their necessity in modern medicine, scientists aren’t sure exactly how anesthetics work. The best theory suggests that they dissolve some of the fat present in brain cells, changing the cells’ activity. But, the precise mechanisms remain unknown. ”
Well the fat cells in my brain may have been dissolved but apparently “according to the nurse” my fat body ( she didn’t say that though) was not co-operating and was moving around in pain on the table for a bit even after my brain was anesthetized .
Not such a good thing for the doctor, I would assume, poised to do a delicate procedure. I, of course was unaware this happened although in my mind’s eye this great lump of a body laden with grief flopping around on the table half-naked probably wasn’t a great sight for him that New Years Eve. He earned his money that day.
So here it is January 2nd , my pain has lessened although I am not fully functional but I am endeavouring to sit in a chair for as long as it takes to finish this post for you. – a lap top may be in my future-
But somehow I will get this post written and posted even if I have to take jpgs of these scribbles and post them.
Another year without you in our lives will not be happy but hopefully it will at least be free from physical pain…. and I think of you every waking minute of every pain filled moment… I love you Chris
Disclaimer : The views and opinions in this post as to various doctors and hospitals are entirely my own based upon my varied experiences with such entities through out the illness of my family members and myself. I have no medical expertise but the life experience of having been there immersed in the world of medicine !
My personal day of infamy- December 3rd- has come round again- How can that be? You see the day I lost you, my son, was just yesterday – last night and the pillow was still wet with tears cried in an exhausted sleep as I woke this morning to the rattle of the garbage truck.
There have been so many millions of words , hundreds of thousands of books written about grief and especially the loss of a son or daughter.
Looking for answers, looking for some verification you aren’t alone in your world of agony, you search the words of others. This loss that is so different for me than any other of the losses I have lived through. You wonder……
am I going insane?
Am I alone in this insanity? Do other mothers experience the kaleidoscope of the “being” that I have become- fragmented disjointed only coming to together briefly in a pattern of who I was once for just a brief turn of the day, week, month, year.. When am I supposed to be “healed? People tell me it will get better with time?” Can that be true???? Is there hope the agony will not continue in such terrible strength as to block out any happiness
Sometimes you recognize bits of you in their writings, breathe a sigh of relief when you realize you aren’t alone or insane, abnormal and that maybe you too may be to get better at wearing the mantle of mania that is named “grief”.
Maybe, you may one day have rest without exhaustion and peace ….oh peace…… if only for a few hours, a healing respite from the world where you now tread. Maybe you may be able to function without planning how to manage every day tasks whilst struggling with this crippling grief . You look to see where others are on this journey forced upon you. You hope there is some hope……….
Maybe as time passed it became easier, a hope …. that maybe depending how many months years you are “out from the death” or “into the grief” you will heal have some semblance of acceptance , of peace.
I remember reading, just after Chris died, the words of a mother whose daughter died of Hodgkins two months before Chris. She was my “gauge ” I would follow her thoughts as she wrote of her turmoil. You see I didn’t know how I would live through the next day, how I could endure the loss of you Chris?
I cleaned all the closets , threw away the non essentials getting ready for my own death in the first days after you died. I didn’t want those whom I would leave to have to deal with my earthly baggage. I felt sure I could not endure this gutting ache , this pain beyond description that crushed me , crippled me for too many days or weeks. Surely my heart would give out, my lungs that fight to breathe between the gasping breaths mingle with choking tears would stop fighting for air.
My brain on fire with questions of why and at the same time dealing with the wickedness of selfishness, thoughtlessness and control
also visited upon us added to the flames . I was sure my very brain would burn out leaving no room for the every day tasks it sent my physical being.
And yet this morning I am still here but don’t ask how? I am better at dealing with the losing of you in public, when needs must . Techniques have been learned . These months and months of torture have taught the body how to endure and survive the hours. The brain has developed an automatic function , to quickly intercede and push down the memory or trigger moment but, that is all it can do. It functions to temporarily hold the Tsunami of grief at bay only for the wave to draw back gather strength and flood your being once more when you are out of the public eye or having to function in the world where time did not stop.
When you died Chris, I died, the Loraine that was is no longer. I look for you in every black Ford 150 that travels on the road. I wake in the morning still hoping this was just one horrendous nightmare. Time stopped , I stopped The me that I am now was born that December day the 3rd – born in grief and lost in sorrow. There is no I in Rest and Peace……
Yes! there is a turkey in the oven this morning – Queen Anne potatoes and roasted veggies getting prepared to take the journey to Nikki’s. There will be smiles and little boys getting into mischief
Family will gather and some of us will push away the memories of the last Thanksgiving Day when we “were a family complete” in order to make happy memories for children and realtives.
The tears will be held in check as best as able with a helping hand from those loved beyond all tears- they are my life support . I know I am not alone on this day , there are other mothers and fathers , sisters and brothers who are being brave this day and remembering and missing silently with controlled breathing –
Thanksgiving Day I sat all alone in a waiting room, hustled out of the ICU room as my son, with tears slowly filling his eyes dropping silently on his cheek, was being prepared for the vent as he had started choking on the sip of water I had given him.
I heard the last words he ever spoke that Thanksgiving Day. I waited in the ICU waiting room as Code Blue was called , the technicians coming out high fiving as they had completed the procedure in record time – celebrating their own kind of “touchdown”. Did they not realize they broke my heart…. and then a young doctor coming out to me asking if I wanted Clergy as my son was dying. That was our last Thanksgiving Chris. There was no one there in that waiting room- I was alone, totally in another world , reality crashing forth into my brain my heart not accepting….,
my mind whirling with wanting to stop time , to find a way to wake from an nightmare.
The Cretans of Control ( Lombardi and co)
showing up later with their nut rolls and recipe swap – I couldn’t grasp what was happening , who were these people invading my terror with their leftovers? –
The missing is monumental…. it is taking all I have to keep breathing.
So I am thankful this year for my own special life support, Nikki, Jim, my husband, Nana my wonderful friends, cousins and especially those two little boys Gavin and Braedyn, who make me smile when I struggle to breathe .
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
A couple of months ago I watched a television program on
past lives and regression therapy.
Being the cynic that I am , I looked at the show with more than a hint of skepticism. In ALL things I look at the “agenda” who profits from promoting “health” – “beliefs” from organized religions of the world to those that can talk to the dead and those that can say we are reincarnated. As I reach my sell by date in this life I suppose I will find out the truth soon enough 😉
However, curiosity got the better of me , I decided to try this regression therapy- after all I pride myself in not being a follower, having some intelligence , not easily fooled. I also wondered IF hypnotism would work – maybe I could change the habit of “food for comfort” !
I spent a few days researching those practitioners within a reasonable driving distance who had certain qualifications – one being clinical psychologists who would allow the session to taped and also witnessed. I found half a dozen that fit most of the criteria but only one ( who happened to be the most reasonable – this does not come cheap) the closest and also the ONLY one who allowed the taping and the witness. That was the deciding factor for me ! I was going to see a complete stranger on their turf. I wanted one of my own with me . I didn’t want to end up barking like a dog at the next council meeting if someone gave a trigger word.
Purposely , I did not research what it is like to be hypnotized, what happens, regression techniques, or relaxation techniques. I did not want to go to the session with any preconceived ideas planted in my brain.
I took my daughter with me and our trusty tape recorder and for once a “purposely” open mind .
Would I really find out it I had lived before? Would THIS life and the tragedy that befell me and mine with the losing of my son finally make any sense? Because none of it in this life time makes any sense to me, not the faith-based religions, not the medical diagnosis and subsequent explanations which amounted to a “shoulder shrug” or the crassness experienced by those that supposed to love. Would I find out from a previous existence what I had done?
Answers, we spend our life looking for answers to questions of the unknown, looking for logic where there is none. Humankind, desperate to find out we are somehow “special” – more so than the other inhabitants both vegetable and animal of this planet who come into being, live, feed, procreate and die leaving another generation to carry on. What makes us so special to think there is a plan” for us? We certainly haven’t learned much from all the teachings in the books of organized religions. Thinking that maybe I WAS “special” and there was a plan, a reason for this gutting pain that would ,at last make, some sense.
Had I done something in my past life that now revisted me in kind in this? Was I supposed to right a wrong or deal with the cretans in this life I had neglected so to do in a past life? Some sort of Karma ?
Karma is a Sanskrit word from the root “Kri” to do or to make and simply means “action.” It operates in the universe as the continuous chain reaction of cause and effect. It is not only confined to causation in the physical sense but also it has moral implications. “A good cause, a good effect; a bad cause a bad effect” is a common saying. In this sense karma is a moral law.
Now human beings are constantly giving off physical and spiritual forces in all directions. In physics we learn that no energy is ever lost; only that it changes form. This is the common law of conservation of energy. Similarly, spiritual and mental action is never lost. It is transformed. Thus Karma is the law of the conservation of moral energy.
By actions, thoughts, and words, man is releasing spiritual energy to the universe and he is in turn affected by influences coming in his direction. Man is therefore the sender and receiver of all these influences. The entire circumstances surrounding him is his karma.
With each action-influence he sends out and at the same time, receives, he is changing. This changing personality and the world he lives in, constitute the totality of his karma.
Karma should not be confused with fate. Fate is the notion that man’s life is preplanned for him by some external power, and he has no control over his destiny. Karma on the other hand, can be changed. Because man is a conscious being he can be aware of his karma and thus strive to change the course of events. In the Dhammapada we find the following words, “All that we are is a result of what we have thought, it is founded on our thoughts and made up of our thoughts.”
The first part of the session which lasted over two hours, was a getting to know each other and explanations of what would be happening to me as I went through the process. The do’s and don’ts and also the “why” I wanted this session. I was completely open and relaxed……
The following links explain pretty much what I was told in the beginning of the session
I was told- I would be aware of my immediate surroundings, I would hear the “outside noises etc” and so we began
……. To be continued……….