Author Topic: Tell Your Story  (Read 9481 times)


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Re: Tell Your Story
« Reply #15 on: March 22, 2015, 05:39:04 PM »
Thank you so much for sharing your story.  I know that the sharing of our stories can be so incredibly hard and take us back to some vey dark places in our lives, but speaking as another extreme caregiver, it is important for me to read others' stories and to see that I am not alone.
"The highest tribute to the dead is not grief but gratitude." - Thornton Wilder

Thank you, my dearest Kenneth, for loving me and for giving me the best 13 years of my life.


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Re: Tell Your Story
« Reply #16 on: March 22, 2015, 05:58:28 PM »
ATJ, your post is so beautiful.  I walked a similar path with my husband, Scott.  I realized on Friday it was the four year anniversary of his diagnosis and that prompted the predictable period of thinking through it all. I honestly don't think I'd let myself go back mentally to those early days until just this weekend.  Or maybe I did in the fog of grief and simply no longer remember.

Here is my story. 

My husband and I were/are both educators.  We had a child "late-ish" in life and had just bought a house across the street from the school we intended for her to attend through 8th grade.  We weren't completely moved in yet, but I was on my first sabbatical from teaching in 9 years and we agreed that I'd go to Europe to do research for three weeks over the end of January and beginning of February.  When I got back, Scott hadn't opened any of the mail.  Mail was all over the counters.  I just thought he had been overwhelmed with work and our daughter.  But things continued to get still more strange.

My four year old daughter was telling me her Daddy (who grew up in this town) was having trouble finding the route to our new house, always heading back to our old house.  Then Scott started to have "visions."  Disturbing dreams of a cat who was trying to kill him.  He spoke of little else.  We visited the family doctor twice and an urgent care center and both sent him home saying it was a virus, and not to worry.  One night he was reading to M and just out of nowhere passed out on the living room floor.  More visions.  The next day he woke up and said, "Something is seriously wrong.  I am going to the ER."  It was a Sunday. In March.  A Sunday very much like today, in fact.

About 5 hours later I got a call from the hospital.  They said, "You need to come in right away.  Your husband is in the neuro-ICU."  I had no idea what was happening but I knew it was not good.  I dropped my daughter off at my parents (a phenomenon with which she would sadly become very familiar) and went to the hospital (with which sadly I would become very familiar).  The neurosurgeon said that his guess was that the mass in my husband's brain was Glioblastoma Multiforme IV - words I had never heard before and the weight of which wouldn't sink in for another 48 hours - but that surgery was required to confirm it and that it had to happen fast.  In the interim, they said we had two days to get our affairs in order.  So we hired an attorney, made decisions and drew up the paperwork necessary in the event he didn't survive the surgery.  Scott had a ten hour craniotomy. I was at my parents' house when the doctor called and confirmed it was GBM.  I said, "What does that mean?"  He said, "Six months to a year."  My mother said, "Don't worry, you'll meet someone else."  (really, she really said that).

They brought him back to his ICU bed.  All I remember was one of the nurses telling me that she had taken my art history class a few years back and I think I just stared at her, speechless.  I spent days by the bed.  I listened to a lot of angry music.  And then they sent him home.  Half of his head was shaved and he had a giant stapled wound.  M and I got him a cake that said "May the Force be With You."  and the two of them demolished it in bed.  She loved getting to eat cake in bed. 

Then came the steroids.  Steroids that made my soft, sweet husband into a horrific creature.  Anger, blame, paranoia, extreme religiosity.  Anytime steroids were part of the equation I knew to expect the worst.  But then it got worse.  He started radiation.  He lost his hair.  My child was completely traumatized by this hair loss.  He slept all of the time.  I was like a ship cast out to see with no ability to chart a course to shore.

We decided to seek a second opinion at NIH.  This was the bright spot of it all because say what you will about tax funded health care, everyone there was amazing.  They not only helped monitor his situation but they gave a damn about our well being.  They listened when we said we wanted a balance between quality and quantity of life.  Anyway, for about a year things were seriously intense and topsy turvy but we were managing to live pretty well.  But I was so lonely.  So alone knowing we were fighting an unwinable war, so lonely with living a life with a man who looked like my husband but who morphed and morphed again into being a complete stranger and trying to imagine what life was going to be like when he inevitably died. 

By the second summer, he was pretty consistently demented and not himself.  The doctors left it to me to take away his driver's license.  How do you tell a 49 year old man cranked up on steroids that he is unfit to drive?  Anyway, by that October his back started hurting.  On our regular visit to NIH, this time the MRI showed spinal metastasis and I knew, even if he denied it and would in fact go on denying it until the end, that was the end game.  The first thing that happened was that his growing brain tumor rendered him blind in one eye and then the other.  Then his mobility weakened and ultimately failed him.  We had a completely incompetent hospice service whose nurses took hours to get to our house in a crisis and often gave the wrong prescriptions.  I was on hyper-alert 24/7 and working full time.

Then came the cane and then the morphine drip and then the hospital bed with an alarm on it.  One day my college roommate was here helping me.  Scott made his way to the kitchen but then couldn't get up.  The two of us, with tears just pouring down our faces, carried is dead weight down our long corridor from the kitchen to his bedroom.  We were in and out of the hospital and hospice - no one would keep him.  He wasn't dying fast enough.  One morning he tried to get himself into the bathroom but fell, hit his head on the foot of the bed and was wailing in pain.  I called my father.  Turns out his brain had stopped telling his body how to eliminate.  Back to the hospital.  They catheterized him.  He was in a fog and he hated that catheter.  I spent the better part of two weeks doing nothing but making sure he didn't pull it out.  Those were the last days I had with my husband.  Trying to keep him from pulling out his catheter.  I sincerely hope he was not conscious of any of that.  We then got kicked out of the hospital because insurance wouldn't pay.

After the hospital kicked him out, there was another fall and we went back to hospice. They kept trying to kick him out.  Even with a DNR and no food, he stayed alive.  I watched him slip slowly away into a coma.  At that point I had to tell hospice that I was going to the newspaper and other prominent people in our community if they wouldn't keep him.  I kept saying, "It is not his fault that he is young and healthy!"  But it was battle worthy of Homer.  In the end they let him stay and confirmed he could stay until he died but only because they were afraid of bad publicity or a law suit.  For another 3 weeks I laid next to him, leaving only to teach my courses and put my daughter to bed at night.  He was gone but I still laid next to him.  I read Robert Hughes' Rome to him and I told him everything I'd ever wanted to say.  My goodbye was as long and wordy as this post. 

On February 3, right in the middle of the Superbowl, he died.  I sort of love that.  He hated football.  Unbeknownst to me, my daughter had turned down the volume on my phone to zero so even though it rang I could not hear it.  I learned that my husband died when my parents rang my doorbell at 11 something that night.  They said, "He's gone."  I said, "OK."  And I curled up beside my daughter and went back to sleep. 

Even this post, long as it is, does not do justice to what I witnessed and its aftermath.  For nearly two years, I lived on pins and needles.  I was accused of affairs, berated for being the atheist I have always been, and I was whittled down to nothing by watching a hugely vibrant man be reduced to a humiliating and degrading death. 

But I have made a lot of progress.  Slowly and ungracefully and consciously, I have put the pieces back together.  Whatever shred of naivete or innocence I had is gone but I have learned more than I ever did getting my PhD and I now see a lot of hope.  I am starting to see a new life sprouting and budding in front of us, a life of our own making.  It is an uneasy and messy life but it is ours.  And two years since he died, I think he would be ok with what we've done with the lemons.   Above all else, I have learned that this is it.  This moment is all we've got.  Having always been a planner, that's been a hard pill to swallow.  But in embracing "Be.Here.Now" there has been a lot of liberation.  Scott would also approve of that. 


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Re: Tell Your Story
« Reply #17 on: March 22, 2015, 07:59:31 PM »

This, this, for us too, as with much of what you wrote:

The doctors left it to me to take away his driver's license.  How do you tell a 49 year old man cranked up on steroids that he is unfit to drive? 

A Tout Jamais

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Re: Tell Your Story
« Reply #18 on: March 22, 2015, 08:44:10 PM »

« Last Edit: July 21, 2015, 08:14:05 PM by A Tout Jamais »
"Tu n'es plus là où tu étais, mais tu es partout là où je suis."
~~ Victor Hugo

"Je me souviens de toi ... Je me souviens de nous  - Il était une fois -  Je me souviens de tout!"


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Re: Tell Your Story
« Reply #19 on: March 22, 2015, 09:12:11 PM »
Thank you, CG.  you know I am here for you always. 

I've had to make some hard choices about what to do with everything that happened to us.  Where do you put it?  Who do you become after such trauma?  Can you put faith in a future?  I am trying but it is not easy.  I'm just now working that out at 2 years.  I am humbled by how profound this process is.  For me - and I am just one person - I had to face it all head on; it was the only way through for me.  I have hurt and been hurt many times and I have, most unsettlingly, hurt a lot of people along the way.  I still hurt.  But harnessing the strength to repair the damage I wrought has been an eye opener.  This race is not yet run.  I am changed and a work in progress but I still stand.  No one else needs to know why we do what we do or why we live the way we live.  My daughter and I are two girls facing the world.  We get to write our future.  And sometimes that is scary but sometimes is means great adventures and a sort of liberation and self-awareness I've never been able to embrace before. 

Just tonight I wrote to my best friends with whom I've been estranged for about a year and I think I made some headway in repairing the relationship.  I don't need them as I once did.  My life is completely different now but I've reached a point of wanting to make amends for the detritus of the uglier moments of my grief.  It is a process.  I remain hopeful.  Thank you for hearing me. 


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Re: Tell Your Story
« Reply #20 on: March 27, 2015, 09:16:47 PM »
Christine, I know too well the pain of watching someone become someone else. Dementia is an awful thing in the elderly but a tragic and dangerous thing in someone who is young and otherwise healthy. So many arguments I had with my LH. So many friends who dropped us because "he doesn't look sick" and they were sure his behavior was something he (or I) could control.

Your hospice experience should never have happened. That is not what hospice should be at all. You should have gone to the media after but I should have should my LH's DR and simply didn't have the energy. So much we have to let go.

My sister started nagging me to date at four months out. She was one (of many) in my family, who think that aside from my daughter, LH was the worst thing that ever happened to me. They never mention him anymore. They behave as though I have always been with my second husband.

I don't know how we reconcile ourselves. We start to look back less. We pack away the memories of the really bad stuff. We create and recreate new memories. New lives.

But, imo, we become who we want to be if we allow ourselves. Give ourselves the space, time and cut ourselves some slack.

I don't know what to say about friends. I cut some people loose. Time healed some rifts but not others. People have to meet you half way, imo. There are some things that grief doesn't allow us to get away with but our true friends and those who love us will make more allowances than hold grudges.
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Re: Tell Your Story
« Reply #21 on: April 08, 2015, 08:36:15 AM »
My story begins in 1993; my husband was 29 going on 30.  Up and until that point, he was the healthiest and strongest person I ever met.  He remained the strongest person I have ever known for another 22 years.

Yes, this is a 22-year saga.  If you read it to the end, God bless you.

It was just a few days before our son?s second birthday and my beloved was a passenger in a vehicle that was rear-ended at a high rate of speed.  He suffered numerous bulging disks in his spine, but over the course of the next few months he began developing bizarre cognitive symptoms that no one at the hospital could explain.

One morning he got up for work and appeared intoxicated.  He began hallucinating and I called the paramedics.  As I waited he fell asleep.  When they arrived, he awoke with no memory of the incident and didn?t believe me, even though our neighbor was present and told him otherwise.  The paramedics left, because he was now alert and oriented.  They hadn?t seen what I had.

They did give us a referral to a local neuropsychologist, however, who did an extensive evaluation and diagnosed a minor traumatic brain injury.  Because of the position of his body when the car was hit, his brain had literally smacked around inside of his skull.

Months of therapy eventually ended most of the cognitive symptoms, but his lifelong chronic pain had begun.  Seven years later, he had a lumbar fusion, arthroscopic surgery and received a diagnosis of non-Hodgkin?s lymphoma.  A lifelong smoker since the age of eight, they also threw in a COPD diagnosis and told him he would be on oxygen in five years unless he quit smoking.

For the remaining 15 years of his life, he only ever had oxygen if he was admitted to the hospital.

Perhaps feeling falsely empowered by that fact, he refused to quit smoking.  Later, he tried many times, but he just couldn?t get down past eight cigarettes per day.  Having started smoking at such a young age, he hadn?t developed other coping skills.  Combine that with a list as long as Santa?s of subsequent diagnoses, the stress was just too great for him.

Six months later, he was finishing chemotherapy, declared cancer-free (his first tumor was encapsulated so it didn?t metastasize) and I was severely anemic, had developed an exacerbation of my childhood heart disease and was diagnosed with fibromyalgia.  Neither of us were working or had an income for six more months.

After his disability was approved, he was already feeling stronger and decided he was going to go back to school and earn a degree in Criminal Justice.  He was commuting every day in addition to his studies, but he was doing very well both physically and academically.  At nearly 40, he had never gone back to school since high school.  Our son and I were so proud of him.

He had one setback and had to take a leave of absence, but he eventually finished and after working in asset protection and as a youth care worker at a local children?s home, he followed his dream and pursued a career in law enforcement.

The job market here was terrible at the time, so we talked it over and agreed he would expand his search to nationwide.  Soon after, he was hired as a Deputy Sheriff for St. Tammany Parish, Louisiana, working in Corrections.

The plan was for our son and I to stay in Pennsylvania until he was established.  The training and testing was intense, and he was the oldest one in his class, but he made it through.  Three months later, his blood pressure was so high he had to take a leave of absence and return home.

He never went back.

Instead, a flood of diagnoses followed for the next eight years that slowly wore him down to a shell of the man he once was.  He remained physically strong until the end, though.  He was not confined to bed rest as others in his position would be.  He defied the odds so many times, I almost got used to it, and I developed a false sense of security that he would always do so.

Nevertheless, we went to doctor after doctor, specialist after specialist, but the diagnoses, the surgeries, the therapies continued to almost no avail, because as soon as we had one thing under control, three more cropped up.

We started with a visit to his oncologist who ordered a PET scan and my once cancer-free husband lit up like a Christmas tree from his neck through his entire torso.  We were told, however, that all were too small to biopsy for chemotherapy, and since he had developed severe neuropathy in all four of his extremities, the doc wasn?t going to put him through chemo again at that point.

Regular check-ups followed for years with no change.  As his other conditions developed, the oncologist went on the back burner.  He had so many doctor appointments that he just couldn?t handle any more.

WIthin the first two years he was diagnosed with severe hypertension, diabetes, metabolic syndrome, severely high cholesterol (he was on three medications for that alone), bilateral knee instability (he fell all the time), in addition to the cancer and the COPD.  Then in 2009, we learned that his spleen was grossly enlarged and harboring his platelets.  Surgery was the only option.

Given his COPD, general anesthesia was always a tricky bit for him.  There was always the fear that he wouldn?t be able to breathe on his own afterward.

We were sent to a highly recommended surgeon who had an excellent reputation.  However, on the day of my husband?s surgery, he nicked the splenic artery and closed him up.  How on earth no one noticed this is beyond me.  Thank God an alert recovery room nurse saw the signs of internal bleeding and managed to call the surgeon back before he left for lunch.

Lee had never had general anesthesia twice in a row before, and it didn?t go well.  While the surgeon stopped the bleeding, Lee was now stuck on the ventilator.  The nightmare had become reality.

I really thought I was going to lose him that day.  I had been waiting 11 hours when an understanding nurse came and got me, allowing me to slip into the recovery room to see him for the first time since six that morning.  He was already swelling up and looked like he would never return to me, but I talked to him and told him how much I loved him while the silent tears streamed down my face.  I know he heard me.

They finally got him off the ventilator the next day and he spent the next two weeks in the hospital, the first week in ICU.  Unbeknownst to me and despite my careful planning and speaking with everyone involved, his fentanyl pain patch had been removed for surgery and not reordered and replaced afterward.

I found a man who was writhing in pain and repeatedly saying, ?I?m going to die, I?m going to die.?  The only thing that would soothe him was a cool cloth on his head that I reapplied for hours.  But he just kept getting worse and no one could tell me why.  Finally, I figured it out, checked for the patch and saw it was gone.

It took a couple more hours to get it ordered and applied and then several more after that until he had enough medication in his system to ease the pain and withdrawal symptoms.

Long story short, he continued with all sorts of digestive symptoms that got progressively worse over the next two years.  After repeated trips back to the surgeon with no answers, we sought out a second opinion and learned that he had two surgical hernias and part of his bowel fused to his stomach.

That was the first time we ever considered suing someone, but the surgeon had died suddenly. Lee remembered he didn?t seem like himself on the day of surgery, said he was acting weird right before he was put under.  Apparently, he had been sick for some time.

In 2011, Lee underwent corrective surgery and miraculously, the new doc was able to repair everything including the bowel resection without the need for a colostomy.  He was feeling better than he had in two years and things were looking up.  But then my next dump of diagnoses fell and I was off my feet for ten months out of that year.  We were like the blind leading the blind.

Meanwhile, his chronic pain was getting worse and he was on an astronomical amount of narcotic pain medicine, to the point where he was so high, he was constantly losing his balance and falling, nodding off, and getting increasingly confused and disoriented.  My husband was a pretty big guy, and I am a pretty small woman.  Between that and my own health issues, I found myself unable to care for him as well as I thought I should be at times.

I suggested visiting nurse, but he refused repeatedly.  I also began suggesting we return to the oncologist for another check-up.  His pain getting so much worse, and his complaints that his bones felt like they were breaking, cracking all the time with extreme pain, followed by a fractured hand and four disks completely gone, I was concerned that the cancer had spread to his bones.

HIs father had died of bone cancer and his sister passed from brain cancer.  Between his history and his family history, I was so afraid.  But he repeatedly refused to see the oncologist, saying he didn?t think he could go through chemo again.  He was even afraid to have his back operated on again, opting for a series of day surgery injections instead.

The beginning of the end came four months before he died.  He was standing in front of the refrigerator looking for something to eat and suddenly both of his knees gave out.  He fell and  fractured every bone in his right foot; the doctor said it looked like he had been in a car accident.  She had never seen a fracture that severe from a simple fall.

He had to go through a series of surgeries and casts to put his foot back together again and was non-weight bearing until the day he died.  We have no bathroom on our first floor so it was a challenge.  Worst of all, his fractured right foot was his ?good foot?; he had lost three toes and a quarter of his left foot in an industrial accident back in 1985.

I begged him to go back to the oncologist.  He developed ascites and his abdomen kept growing, but he still refused to go.

He died in his sleep during the early morning hours of January 3.  I had sat up with him until 3 a.m. that night.  When I awoke at around 11 a.m., I found him cold and unresponsive.  Oh, how I beat myself up over that!

Why didn?t I see that this time was different, that his semi-conscious state was not the effect of the narcotics this time?  Why didn?t I stay up ALL night with him?  Why did he have to die alone, without me by his side to send him off?

It wasn?t until today, as I was writing this, that I realized that had I done any of these things, his life may have been saved, but his agony prolonged just so he could go through another round of chemo and endure another lumbar fusion, neither of which he wanted.

I was so used to him beating the odds and bouncing back that I really was shocked when he passed.  Hiis physical strength sustained him all the way up to the end.  We had just enjoyed an amazing holiday season, Christmas, our 27th wedding anniversary and New Year?s.  He had a great week, which often happens before someone passes. 

As a former nurse, I would have seen it coming, but as a wife and best friend of 38 years, I couldn?t my hand in front of my face.  The very thought of living without him, thrust me into a deep state of denial.

Right after I found him, I had an out-of-body experience.  I believe it happened, because I really felt I couldn?t live without him, but it wasn?t my time so I was sent back.  But telling our only child, who at 23 considered his father to be his best friend, was even more arduous.

I was still in shock when I woke him and told him.  Oh, the pain of seeing him run downstairs, to hear him screaming, to see him struggle to move his father to the floor to perform CPR.  I knew it was too late, but I had to let him do it.  He needed to do it.

That was a Saturday.  On Sunday, I was hugging family and friends while they cried.  By Monday, I was medicated.  I was having severe panic attacks, which was not good given my heart disease.  The first month was one big, awful, gut-wrenching pain as I walked around like a zombie who periodically burst into tears.  Neither of us ate anything for over two days.  We never even thought about it.

I have just weaned off the Lorazepam for that, but remain on an increased dose of Abilify that is going to have to be increased again.  Thankfully, it works with my Cymbalta for my fibromyalgia, so I am not on a high dose.

I have surgeries of my own that have been put off for years that cannot wait any longer.  And all I think about is I?ve never had a procedure done without him there to send me off and to be by my side after I return since I was six years old.

We were just young teens when we first met.  I can barely remember my life without him in it anymore.

Yet, here I am, making little bits of progress three months out and never stopping for more than a few days of active grieving, because I have an 87-year-old mother who depends on me, and I have to fight for my own survival since there was no life insurance.  Ironically, Lee finally agreed to take out policies just days before he died.

Looking back, I think he knew he was leaving me soon.  He just didn?t know how soon.  And ever protective to the end, he didn?t tell me.

Having been denied my own disability three times over the years for a laundry list of reasons, I?ve had to reapply in order to qualify for a widow?s pension since I am under age 60.  Why?  Why does the age matter, when one loses their sole source of income along with their beloved?  My last denial was due to his income being too high, so they put me in this financial debacle. 

Now, I have to wait for months while I continue to work to establish myself as a freelance writer and live on a mere $136 per month from Section 8, which is intended for payment of utilities. 

Perhaps, it is a blessing that I have so much on my plate, that falling apart for more than a few minutes is not an option.  The first month I was literally sick with grief and had to stop crying.

My best friend, my soul mate, my beloved took a big piece of my already damaged heart with him.  I am forever different:  damaged, yet strengthened, scared, yet empowered, alone, yet feeling him with me at the most important times.

He is still protecting me, watching over me, and I will still miss him with every fiber of my being, every single hour of every single day until we see each other again.
I love you more...


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Re: Tell Your Story
« Reply #22 on: June 15, 2015, 10:08:19 AM »
If you have read this whole post, thank you.  I don't tell this story much anymore.  I needed to do it today.

You are welcome.

I rarely tell my story either and certainly couldn't in such detail. It's too hard. I don't think I have enough words anyway.

I understand the need to tell it.

Thanks for sharing.

Thank you, anniegirl for sharing. It has helped me so much.

Last night, I was journaling, and I was thinking about all of the people I love who have either died or are about to die. My father died 18 years ago from cancer, and it was a difficult six months in which I did the bulk of the caregiving.
My husband died in March after 16 years of fighting a brain tumor that robbed him slowly of so much.
My mom has severe Alzheimer's and in the last few weeks has lost everything that made her her.
One of my best friends has stage four colon cancer and the doctors just can't get it under control.

Someone said to me, "Everyone has burdens. Maybe your burden is that almost everyone you love will slowly die in front of you."

So, I am writing about this last night, but all I can get out is a half a paragraph. Nothing else. I go to my daughter, and we talk about our feelings of Scott's presence in our lives, and she said, "I know he is with me. I am almost exactly like him, and I can just hear him, see him in everything I do."

And I thought that maybe I just will never feel that he is still here because he and I were opposites (who attracted like mad). But reading your story made me realize that on one hand, I have already done a lot of grieving as he lay in a facility unable to do anything much. And that maybe it is just too painful for me to feel he is with me just yet. To reflect on our life together and what we actually lost might actually kill me at this point.

I wish I could be more clear about what your story meant to me. To know you walked those hallways and had those conversations, worries and shriveled dreams just matters. In a terrible, awful way. 


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Re: Tell Your Story
« Reply #23 on: June 15, 2015, 11:52:16 AM »
And that maybe it is just too painful for me to feel he is with me just yet. To reflect on our life together and what we actually lost might actually kill me at this point.

When you are ready to look back and sort through, you just will.

I don't feel my LH around because I am pretty sure he's gone.

LH died on a Monday night and by the time, everything was taken care of, it was well past midnight.

Surprisingly, I was able to sleep and bit and when I did, I had a dream where I saw him and two other young men (later I realized that they were probably two highschool buddies of his who'd both committed suicide when they were in university - deaths that impacted LH greatly). They were packing up the trunk of LH's old car. The one another friend of his had totaled shortly before we met.

LH never looked my way and even from the distance, I could see he was happy and excited about the trip he and his friends where going on and then they climbed into the vehicle and drove away.

Occasionally a song will come on the radio when I am vexed or worried or I will hear it and it will remind me that the day is an anniversary of this or that. But otherwise, he is living his destiny and I am living mine. And that's okay.

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Re: Tell Your Story
« Reply #24 on: June 15, 2015, 04:48:26 PM »
I really have no words for these stories. I don't even have to tell my story since everyone has told it already. Here's a poem that I think of when I reflect on the caregiving for someone so strong, so intelligent, so lovely who became an empty shell and passed out of my life.

 I WAKE and feel the fell of dark, not day.
What hours, O what black hours we have spent
This night! what sights you, heart, saw; ways you went!
And more must, in yet longer light?s delay.   
With witness I speak this. But where I say       
Hours I mean years, mean life.
And my lament
Is cries countless, cries like dead letters sent
To dearest him that lives alas! away.   
I am gall, I am heartburn. God?s most deep decree
Bitter would have me taste: my taste was me;       
Bones built in me, flesh filled, blood brimmed the curse. 
Selfyeast of spirit a dull dough sours. I see
The lost are like this, and their scourge to be
As I am mine, their sweating selves; but worse.


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Re: Tell Your Story
« Reply #25 on: July 10, 2015, 08:43:40 AM »
I look back in awe at the extreme caregiving I provided. I always considered it a blessing that I was able to do it and never "wanted" to be anywhere else.
2011: a trip to ER in the middle of the night, exploratory emergency surgery began a search for his diagnosis. Bladder cancer. He was 39 years old. He was referred to a surgeon to have his bladder removed. When I described back pain to the surgeon, he frowned and postponed the surgery, pending a bone scan. METs were found on his spine and pelvic bone. Chemo began. For 18 months, he endured chemo and its side effects. We had 2 in their first year of college and a 13 year old daughter at home. We were both educators. He was a principal and I, a teacher. Pain meds began immediately. The Drs continues to add to the cocktail trying to lessen his pain from the bone METs. It never really worked. 2 weeks before he died, he got tired and gave up. The cancer had spread to his liver and his body began the process of shutting down. A trip to the emergency room confirmed that he was close to death. A kind Dr confirmed what his onco would not, he was close to death.
Hospice came in Thursday evening. They stopped by once a day for about 30 minutes to see if I needed anything. The director told me "this is the hardest thing you will ever do." I had no idea that I would do it alone. Sunday he passed. About 30 minutes before he passed, he saw God. At the moment he passed, a neighbor (who was also a widow) knocked on the front door with lunch in hand. My best friend left church and came bursting in, saying she knew she needed to be there for me. He died at 11:15, the same time our church service ends and on Palm Sunday. I already had an appointment to meet with our pastor at 12:30 at my home that day to pray for us. Ironic? About 75 people showed up at my house within an hour. It was insane! He was a very private person and didn't want company, so I kept his condition very quiet. When I asked people why they showed up, they said "God had put it on their heart".
Perspective is a funny thing. When I realized he had stage 4 cancer, I wanted to run. I wanted to exit my life and responsibilities. I was so afraid. It wasn't easy taking care of him. Meds administration, appointments, pain, etc. through the process, my perspective changed. I found it to be a blessing. He wasn't alone. There was nobody who loved him like I did, who could comfort him and maintain his dignity and privacy (which he wanted). Being with him in his final days was the most intimate experience I have ever had. I likened it to child birth. A completely vulnerable person, experiencing a spiritual and physical process. It was a blessing in my life.
Am I changed? Yes. Forever. Do I resent it or regret it? No. Absolutely not! Would I do it again? It was the most selfless act of love I've ever given.
Yes. I would do it again.


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Re: Tell Your Story
« Reply #26 on: July 12, 2015, 08:11:03 PM »
I am sure that I wrote this somewhere else but the story is clear in my head-like it happened yesterday.

It was June 2008.  He complained of feeling very tired.  Couldn't keep up with the guys at jujitsu.  He had lost weight-thought it was from all those rigorous workouts.  For the first time in 24 years I bought him size medium shirts-red flag. 

He saw his doctor for a physical in July-anemic. Dr didn't seem concerned but we pushed.  He had a colonoscopy.  Nothing.  Endoscopy.  Nothing.  CT scan of abdomen.  Nothing.  Doctor decided he had "viral syndrome".  I made an appointment in August with an oncologist/hematologist.  He minimized all of our concerns.  I remember walking out of his office and Bill said"Well, that was a waste".  I watched him that whole summer looking at him and asking friends"Doen't he look a bit pale?"  "Look at his lips".  The glow had gone from him.  When the beach club closed on Labor Day I remember telling a friend that I felt like the other shoe was gonna drop.

In November he fainted at a fundraiser at church.  His doctor saw him the next day and said he must have suffered from low blood sugar.  He had hip pain and figured it was from a yoga injury.  In November he had a cough.  I finally convinced him to go to the doctor.  He gave him antibiotics.   Still had a cough three weeks later.  I sent him back and told him not to come home without a chest X-ray.  I was praying he had pneumonia. His doctor had him get a chest X-ray and he saw a spot on the lungs.  Two days later he had a CT scan and multiple spots were found on the lung.

I knew, from the moment the doctor said there were spots on the lungs, that it had metastasized.  It wasn't a hip injury or low blood sugar.  He had lung cancer that had metastasized to his brain and hip.  We found that out with a PET scan a couple of weeks later but I knew on December 18,2008 that he was really sick.  The other shoe had dropped.

He had chemo, radiation and cyberknife for the brain lesion.  He fought like he had a real chance.  137 days after his diagnosis, he died at home in his own bed.  His iPod was playing his favorite songs and we were all there.  It was a beautiful sunny April day.  The doctor from hospice came by and saw him.  He took off the oxygen mask and within minutes he was gone.

I would do it all again in a heartbeat.  Those days camped out in our bedroom, just hanging out together, were some of the best days of my life.  I have never felt that close to someone.  I would have kept up that pace of caregiving forever if he hadn't been in such pain. That moment came when I had to tell him it was okay to go.  It couldn't have been further from the truth but it had to be said. 

I feel so privileged to have known and loved someone so deeply.  What a love!