I Have Fallen Down The Rabbit Hole

[KarenK]

And I can't seem to climb out!

My name is Karen. My story is a lengthy one, filled with medical disasters CAUSED by medical professionals and culminating with the death of my husband, Ron, on May 5, 2013. At this point, the "who, what, and why" are no longer important. After spending the last month of his life in two different hospitals, I was able, with the assistance of the wonderful Hospice people, to bring him home for the final nineteen hours where I held his hand as he took one less breath each hour. You see, I had to make the decision to forever end the life of the man I had spent the last forty-one years of my life with. It was the hardest decision I have ever had to make, to let this wonderful man go, but I knew in my heart, he would not want to walk the new "path" that been chosen for the rest of his "life", forever tethered to a ventilator, a dialysis machine, semi-conscious in a nursing facility.

I am now traveling my new "path". I don't like this path, but cannot seem to change direction. I have nothing to look forward to. I simply wait for the other shoe to drop, for you see, my daughter has been fighting Stage IV colon cancer for five years. She is holding her own, as I speak, as a "chemo for life" survivor complete with all the wonderful side effects chemo provides. I cannot bear the thought of losing her, too.

Perhaps, in future posts, I can be more uplifting, but the truth is I don't feel very uplifted right now and guess I just need someone to talk with. I am not a "social networker". I have been a member of Cancer Survivors Network since 2009 and have just become a new member here, but I would like to share something I found on another website. I guess it sums it up for me.

Thank you for listening.

Karen

.

Unique and Devastating Loss (by WifeLess)

With the death of our spouse (which here includes fiancée, significant other,
partner, etc.), we grieve the loss of so much more than someone we merely
loved or were close to, like a parent, grandparent, sibling, friend or pet. We
grieve instead the loss of: The one we loved most deeply, cherished and felt
the very closest to. The one we swore commitment to in that unique human
bond of marriage, which many consider sacred. The one we shared the
ultimate partnership with to live as one and perhaps bear children with. The
one who embodied our true sense of home. The one who was our best friend
and who was to be our companion for life. The one we confided in, depended
on and trusted most. The one who really knew, understood and accepted us
as we were. The one we felt safe and protected with. The one we shared
private moments and intimate feelings with. The one we mated souls with.

But it is not just that this most precious person has been torn from our life,
as unbearably heartbreaking as that alone is. With the death of our spouse,
and only of our spouse, many additional profound losses must be grieved as
well. For we also suffer: The loss of who we ourselves were while with them.
The loss of the couple we were once half of. The loss of the life partnership
we once formed. The loss of the husband or wife role we once embraced.
The loss of the life we once lived. The loss of the plans we once made. The
loss of the dreams we once shared. The loss of the future we once envisioned.

Amidst all this, we are also suddenly confronted with many hardships we
never expected to face at this point in our life. Besides financial survival,
increased domestic burdens and perhaps single parenting, additional
challenges less apparent to others but all too real and terrifying to us. We
must now find it within ourselves: To create a new identity. To redefine
our role in life. To establish a new connection to the world. To build a new
network of social relationships. To discover a new sense of purpose. To
formulate a new set of goals. To decide on a new direction for our future.

And we must accomplish these without dishonoring our former life, but while
suppressing bittersweet memories of that life, so that they not hold us back.
Memories of happier times mostly, but also those of our spouse’s death,
either sudden and shocking or after prolonged illness. We must further
endure the feelings of guilt and disloyalty that follow us as we attempt to
forget and move forward, but with our heartstrings tied so tightly to the past.

And all these tasks must be taken on at the lowest possible point of our life in
the worst state imaginable. When we are the weakest, most vulnerable, most
insecure, most isolated, most heartbroken and most emotionally exhausted
we have ever been. Without that one person we long ago became accustomed
to relying on to help get us through life's greatest challenges. The one who,
just by being there, would have provided us emotional comfort and moral
support to draw upon, as well as the strength and confidence we need to
complete those tasks and so much more. But now we face all this alone.

Profound indeed is the death of our spouse. Unique and devastating. For
nearly all of us, much more catastrophic to our life than the loss of any other.
And truly comparable, many of us widows and widowers often feel, to one
other death only. Ours.

[mfh]

Oh, Karen, I am so very sorry. Your quotation says it all...and all of us here do know this pain you so well described...we know the loss you are living...the emptiness...the feeling like your heart has been shredded...for in so many ways...it has been. We are one with our beloveds....I know Bill and I were one soul with two bodies. You came to the right place...that I can guarantee you.

I lost my beloved 3 years ago and yes, medical screw ups were a part of it but not responsible for his death. Certainly made the journey worst for both of us. Thanks to Hospice I got him out of the hospital following a 5 week stay and back home again...as you did and had him home for 5 days before he died in my arms...and how grateful I was for those 5 days and his peaceful death...later we can share more if you wish.

Right now, I just want you to know that we all live in this rabbit hole...we have indeed shrunk (i.e. lost so much of who we are and were) and in time we do transform and I have experienced some of that and in time we feel less disoriented and less crazy but right now you are weeks out from the worst day of your life and we here all understand that, and embrace you and will walk with you. Some of us are as new to this journey as you are and some of us have walked it for a while...it is a warm and loving group of people and though

you never wanted to be here, as none of us did either, you are in the midst of us and we welcome you and will support you. You can not do this alone.

I am also so sorry that there is a risk of losing your daughter and I can not imagine how that must feel having never had children but I know enough people who have walked that path and know it is horrific also. Hopefully she will continue to hold her own but I hear your fear.

I think the best thing you can do right now is know that first, you are not alone; second, you must take care of yourself as you walk through this loss and pain...and do know we are walking with you.

I will be back on as will others here...it is a great circle of women and men, mostly women and we are of many ages. I happen to be 73, some are in their 50s...and there might be a couple younger also....but all of us have gone through what you are experiencing right now and there is only one way for you to walk this journey and that is YOUR way....in YOUR time knowing that the pain subsides but does not go away. Please do come back...

Peace to your heart in the midst of this pain,

Mary

[enna]

Hello Karen, my name is Anne. I want to say how very sorry I am to hear of the loss of your husband, Ron, on May 5^th of this year and the illness of your daughter.

I am happy that you were able to have Ron home and have the help of the angels of Hospice. Forty-one years is a wonderful amount of time to have spent with your Ron. My Jim and I spent forty years together. Not enough time at all for both of us. I am sure that all decisions you had to make were done with love.

You are so new in your grief that I would only say to you – talk care of yourself, rest, eat and exercise as best you can. This grief journey is long and tiring and will require you to be in good physical condition as you progress on your journey.

You have found a caring place to come. We listen and make no judgments. We offer hugs and support. We all understand that there is no time limit in grief.

The quote you added is beautiful. I will need to read it over. Again, I am sorry you have to be here but welcome. Anne

[KarenK]

Mary and Anne,

Thank you so much for your replies. Just "hearing" another person's response is so helpful. Ron's old cat is not much for communication unless he is hungry. He was truly Ron's best buddy, although we get along okay. I suppose I am more of a dog person and have considered a "rescue", but am not sure at this cat's age, how he would adapt. Another loss for our family came a month after Ron. After losing his Dad, my son lost his dog of ten years. Fortunately, pets can be replaced and after a time, he got a five month old puppy. When he visits, the puppy wants to play and the cat wants to hiss and hide, so it probably isn't a good time for a "new" friend.

You know, I plan to go get acquainted over at the nearby senior center and perhaps attend a "grief" meeting. But so far, all I have done is "plan". I just don't seem to be able to make myself step forward. I worked for the same company for almost forty years and seemed to have a lot of "friends", but when I retired seven years ago, we each went our own separate ways. I had only one person(except my son & daughter) to call after he was gone. She was a good friend of my Mother's(who passed away in 2006). She is ninety and in poor health, so I cannot be crying on her shoulder all the time. My daughter lives about 2,000 miles away and although we speak a couple of times a week, she is carrying her own burdens. My son lives only about ten minutes away. We just kind of keep tabs on each other. It's funny. I want to be around people, but I just don't want to talk to them. Does that sound crazy? I suppose I just don't want to burden others with my problems. And yet, I am so glad that I discovered this forum where I can communicate with others who really understand.

On the Cancer Survivors Network, which has also been a lifesaver for me, I put up a post titled "The TV Is On, If Only For The Noise". I guess that's where I still am. Except for trips to the grocery store, that seems to be my life. That, and trying to juggle all the bills. Ron had no life insurance. I am not "crying in my beer" here, but even with health insurance, I'm left with many bills pertaining to the thirteen times he was hospitalized this year preceding his death. But enough of that. I'm sure we are all struggling to find our "new" normal.

As for age, I am 66. Until lately, I did not feel that age, but what is age, anyway? I still drive a big 4WD truck.

I hope to contribute more in the future. Thank you again for offering to help me over the many obstacles on this "path".

Karen

[Lizasoup]

Hello Karen, my name is Liza and I am so sorry for your loss and the pain in your life. I want you to know, though, that your words touched my heart in a very meaningful way and I so appreciate that you shared them. I believe that, if my significant other had the words to describe the loss of his wife 2 1/2 years ago, he would have spoken the words from "Unique and Devastating Loss". Thank you for opening a door into his world for me.

I hope that you find moments of peace in each day.

Liza

[Wifflesnook]

Hello Karen

I'm Jan in England. Pete my beloved husband of fifty years died last year 8 months after a devastating stroke. We were everything to each other and I am still struggling to survive without him. I have found my greatest comfort in this forum with wonderful people who understand because they too have suffered the same (well no one is the same but you know what I mean) loss. And you have your daughter to worry about too.

I am so so sorry about your loss of Ron. The quote you add sums up how we all feel. I shall keep it. Please find here a place to talk. It helps.

[mfh]

Dear Karen,

You are NOT crazy...trust me on that one. Feeling paralyzed goes with the turf. Hard to get yourself going in spite of good intentions. The TV on so the deadening silence does not overwhelm you. Not wanting to talk to people but do not want to be so alone....all normal. Lots of things that sound crazy are normal. Consider that for far more than half your life you shared space, energy, love, work, fun, play, intimacy and souls with one person...and now that person is seemingly gone. (I say seemingly because I do believe those who died are around us...where else would Bill be but around me?) Ever singlye thing in life changes. I can't make a pot of coffee without it being different because Bill was the coffeemaker. I can not do much of anything but what it is different and a reminder and lonely. It does get easier...for lack of a better word. It is 3 years and 3 months now and though it is still quite difficult, the gut wrenching-feel like vomiting pain has dissipated a lot. Only on rare occasions does it creep in to devastate a day or two days. Balancing grief work with distractions, I find, matters. One can not grieve constantly so I took up watercolor, got my dog registered to be a therapy dog (though once done I passed on it as it is so rule/liability laden), continued to publish my magazine until I sold it last fall. I stopped seeing clients well before Bill died having nothing to give and am recently starting to see some again...just a small handful and carefully chosen. It is a constant balancing act...keeping busy and taking solitude to rediscover oneself, to weep buckets of tears, to just be. I do meditate again and that helps a lot (see the meditation topic for ideas). You might also go to www.griefhealing.com which is our moderator Marty's site and is loaded with articles, blog, book titles, music and movie ideas...a wealth of information. I read books..maybe 50 the first year...on grief --ones that helped. it is a one step at a time, one day at a time journey that takes as long as it takes. Do not bother trying to rush through it...impossible.

The world out there, our death phobic culture, does not have a clue unless they have been down this path...and do not know what to say to you most often. Then there are those souls who pop into your life and who do get it and they are to be treasured. People disappear over time. They mean well but do not know what to say or do and many times get it all wrong so one learns to overlook their attempts and appreciate their desire. The world goes on but your world has stopped.

Patience is the name of this journey...it is demanding of patience....you will get to know the people here in time. we all come and go and all are welcoming and non-judgmental and loving and understand this path. I have written a couple of pieces that Marty put on her blog. I will see if I can find them...they might help you feel less crazy.

Here is one that describes this group:

http://www.griefhealingblog.com/2013/07/voices-of-experience-fire-circle-of.html#more

Another: http://www.griefhealingblog.com/2011/08/voices-of-experience-empty-chair.html

And finally: http://www.griefhealingblog.com/2012/05/voices-of-experience-labyrinth-of-grief.html

This is a very warm place.

Mary

[KarenK]

Thank you Liza and Jan, for the warm welcome.

Jan, I have another friend on Cancer Survivors Network who is also in England. Her name is Sonia. That is one of the things I enjoy about the Internet, being able to meet new friends in other parts of the world.

It is 4 AM here and I have yet to find a sleep pattern. So many months of sleeping with one eye open in case Ron called to me in the night. What little sleep he got was on the couch in the family room as he didn't want to keep me awake with his restlessness. I could not convince him to come sleep in the bed. But many times he could not get to the bathroom by himself and needed me.

I cannot shut my brain off long enough to get more than a couple of hours of sleep a night. So many random thoughts running through it 24/7. One of the main ones, I suppose, is that we promised to always take care and protect each other from harm, but in the end, I could not save him. At some point in the last few years, I began to have a recurring nightmare that we were walking down a dark alley and were attacked by three men. As he was trying to protect me, they were stabbing him. I could not save him in the dream either. I guess that sounds a lot like the movie "Ghost". Maybe I had recently seen the movie or maybe it was because I saw him failing and knew there was nothing that I could do.

I have never been a fan of taking pills to solve problems, although I certainly do not look down on those who do. When my daughter was diagnosed with cancer, my doctor(who I visit once a year for BP meds so the top of my head doesn't explode) offered to give me a type of "coping" drug. I declined as I didn't feel that the pill would make her cancer go away. I have always tried to just face things "head on". At this stage of the game, I may actually ask him about a sleeping aid because I know I can't go forever like this. After all, I am the Mom who has to hold this family together even though my children have their own grown children.

Thank you Mary, for the three suggestions. I enjoyed each of them. I could barely hold back the tears as I read "The Empty Chair". Your Bill sounds a lot like my Ron with his thoughtfulness and loving acts. There are still many times that I expect to see Ron laying on the couch watching his favorite John Wayne movie. There are forty years of memories seeping out, some good, some bad, but they are all I have left now. I especially miss the big gentle "bear hugs". At first, I too, could not wrap my head around the idea that he was not going to return home after that hunting trip or that trip to the grocery store(I hate going grocery shopping) or most recently, from one of his many hospitalizations. Slowly, but surely, it has sunk in that he is NEVER coming home. I guess this is the beginning of the "acceptance" phase of this journey.

I was the coffee/breakfast maker, but boy could that guy cook up some good meals. He loved to cook and was always trying out new dishes. I hate to cook. In fact, I would rather iron than cook. Sounds pretty silly because who irons anymore? So right now, my best friend is Stouffer's and the microwave. My 20 year old microwave quit right after Ron died and I had to go a few days without one. You would have thought I was stranded in the desert without water. It's funny how certain "things", just like people are such an important part of your everday life and the sddest thing is that things can be replaced, but people can't.

There are so many things I want to say, but I realize that sleep deprivation makes one sound rather "loopy" so maybe I should shut up and quit rambling for now and try to sleep a little.

I will enjoy talking to each of you and other members again, soon.

Karen

[enna]

Oh, dear Karen, you have found a place that I think you will be comfortable at since so many of us like to talk! Sleeping is one thing that has also bothered me since my Jim’s death. While caring for him for those few years as Alzheimer’s disease took over his mind and body I would always have one ear turned into his calls. I still awake at night and think that I’ve heard him stir only to find that I had forgotten to turn off the TV. Yes, the TV is on just for the noise for me. I don’t watch it – I listen to music, watch movies, or catch some news.

Something that helped me on my journey was to go back and read some of the journeys of others who are here. You soon learn that almost everything that happens is something others have experienced. It is good to know that these feelings we have are ‘normal.’

Another thing that I have learned is that it is good to talk about my grief. To express how I am feeling. I had a hard time with that at first because I wasn’t used to talking about me. I have learned that it helps me to move along in this journey. I am only beginning, but it is a beginning.

The people here are patient, understanding, and yes, they sometimes nudge you ever so gently along. We really are like a family. We really do care for one another. Most of all, we understand what is happening and we allow it to happen. We are all at different places in our journeys but we all are walking that same path. Again, welcome. Anne

[kayc]

Karen,

Welcome to this site, it is a place that has been dear to me the past eight years. My husband needlessly died because a doctor ignored his repeated complaints/symptoms and did not send him for testing...he suffered damage to his heart and finally his fatal heart attack. I did talk to them about it after he died as I didn't want him to ever hesitate to send someone else for testing and their life to be lost, but alas it has happened since.

You are not only suffering the loss of your husband, which can be the single greatest loss in one's life, but the additional trauma of watching your daughter suffer through her struggle to survive. My heart goes out to you and your daughter.

Thank you for sharing WifeLess' post, that about covered it all. It could have been written by any of us as we have all experienced this.

I hope you will continue to come here and be a part of this site. It makes all of the difference in the world to be able to come here and share with the wonderful people here I have come to know and love.

[mfh]

Karen,

I cannot shut my brain off long enough to get more than a couple of hours of sleep a night. So many random thoughts running through it 24/7. One of the main ones, I suppose, is that we promised to always take care and protect each other from harm, but in the end, I could not save him. At some point in the last few years, I began to have a recurring nightmare that we were walking down a dark alley and were attacked by three men. As he was trying to protect me, they were stabbing him. I could not save him in the dream either. I guess that sounds a lot like the movie "Ghost". Maybe I had recently seen the movie or maybe it was because I saw him failing and knew there was nothing that I could do.

Thank you Mary, for the three suggestions. I enjoyed each of them. I could barely hold back the tears as I read "The Empty Chair". Your Bill sounds a lot like my Ron with his thoughtfulness and loving acts. There are still many times that I expect to see Ron laying on the couch watching his favorite John Wayne movie. There are forty years of memories seeping out, some good, some bad, but they are all I have left now. I especially miss the big gentle "bear hugs". At first, I too, could not wrap my head around the idea that he was not going to return home after that hunting trip or that trip to the grocery store(I hate going grocery shopping) or most recently, from one of his many hospitalizations. Slowly, but surely, it has sunk in that he is NEVER coming home. I guess this is the beginning of the "acceptance" phase of this journey.

I was the coffee/breakfast maker, but boy could that guy cook up some good meals. He loved to cook and was always trying out new dishes. I hate to cook. In fact, I would rather iron than cook. Sounds pretty silly because who irons anymore? So right now, my best friend is Stouffer's and the microwave. My 20 year old microwave quit right after Ron died and I had to go a few days without one. You would have thought I was stranded in the desert without water. It's funny how certain "things", just like people are such an important part of your everday life and the saddest thing is that things can be replaced, but people can't.

Karen, Sleeping is and has been an issue for many of us. And I do know about sleeping with one eye open during caregiving days. I never used drugs as they just leave me feeling groggy and unclear. It is tricky to find a sleep aid that does not have that affect. I do hope you are able to get some sleep as it makes such a difference on our days. One thing I did was to put relaxing music on my iPod and that helped me sleep. Sometimes I would listen to public radio programs and fall asleep listening having put my iPod on a timer to go off. It worked well unless I was super interested in the program and that kept me awake. It is a delicate balance.

Your dream sounds so painful. It seems to resemble your feeling of not being able to help Ron survive. I know I felt so helpless so often with Bill. There was little i could do sometimes to comfort and I was exhausted...it was not a good mix and very difficult days and nights.

Bill did a lot of the cooking also and cooking for myself is still a challenge. I do well some days and not so well on others. I eat simple meals. I am not much of a meat eater though I do eat it sometimes but tend to prepare very simple meals...and yes, the Lean Cuisines such as they are are in the freezers for emergencies or desperate times.

Mary

[MartyT]

Hi Karen. As Mary says, having difficulty with sleeping is not unusual when we're grieving, and you certainly do have reason to be awake and worrying at night. I'm so sorry for all of it ~ but grateful that you've found your way to this warm and caring place. You might find this article to be of interest: Tips for Coping with Sleeplessness in Grief

[Queeniemary]

Karen,

We have all fallen down that rabbit hole, and I am so sorry for your reason for joining us here. I am so sorry for your loss of your husband Ron in May. I have been coming to this place since a few months after my husband's sudden death in January, 2010. Mike was not ill, and had a massive coronary, no signs, symptoms. I was in the hospital about 1 1/2 hours away, having just had a total knee replacement two days before. He died instantly and lay on our dining room floor, with our dogs around him until my daughter found him about 16 hours later. She went to check on him, when I could not reach him on the phone.

You are just starting on this journey, and from my own experience, I know you are probably still numb and it all still seems like a dream (or nightmare). All I can tell you is that after 3 1/2 years, I am coping. That old cliché, time helps, is true, at least for me. As someone else said, take good care of yourself, getting enough sleep can be a problem, and still is for me. I do depend sometimes on a sleep aide that does not seem to make me groggy. You have come to a site full of wonderful, caring people, who also, at one time or another, have fallen down that rabbit hole, and who have survived to talk about it, and to help others with their wisdom. I know how much I have been helped by being here. No one judges you, you can say anything you need to say, rant or rave, and someone will be listening, and replying with maybe just the very thing you need to hear.

Keep coming here, you won't regret it.

Mary (Queeniemary) in Arkansas

[KarenK]

I hope you all can understand just how grateful I am to have been warmly accepted into this group. Although I have many "cyber" friends at the CSN group, I primarily remain a member there in support of my daughter on the colon forum and some of the special folk on the H&N forum. However, it is really not a place to shed tears as a positive approach to "beating" cancer is much better for all concerned, especially the "newbies".

If it's alright with you, I would like to share part of the story surrounding the decline of my husband, Ron. It is only a small part and does not include the many appts. we also had, sometimes as many as 9 each week, but shows his fortitude and his will to live.

You may choose to believe the first part if you wish. As I mentioned, I am not normally a person of faith. Our daughter has now been fighting her cancer for almost 5 years and had gotten to a point where she was n longer able to have chemo. Her condition was declining. She is Ron's stepdaughter, but has been "his" daughter since she was 7 years old. She is now 49. For several months before his diagnosis, he, being a person of faith, would repeat the same prayer each night, "Lord, take the cancer away from my daughter & give it to me."

In Aug. 2012, he noticed swelling in the right side of his neck. On Oct.12, he went for his regular Endocrinologist appt. & was told to see an ENT.

On Oct. 24, we saw an ENT I had chosen from our health plan. The ENT noticed a black spot on the back of his tongue & did a biopsy. It was malignant & on Oct. 29, a CT was done which showed BOT & Nasopharyngeal Cancer w/ lymph node involvement. There was also a spot on his left lung.

Despite my having provided a thorough medical history to this ENT, he ordered a CT/PET w/ contrast dye which was done on Nov. 8. This is poison to a person with his medical conditions, something neither of us knew at the time, but surely this man who had been practicing for many years should have known.

On Nov. 15, we had a consutation with a chemo doctor who was unable to read the CT/PET but requested a feeding tube anyway.

It was time to find a second opinion so I was able to get him into MD Anderson for Dec. 7.

Meanwhile on Nov. 20, we had a consultation with a radiologist who read the CT/PET and confirmed the H&N cancer as well as the lung.

On Dec. 7, we met with the surgeon @ MDA who said he was treatable, but it would be difficult. You see, around our house, Murphy's Law reigns.

On Dec. 17, the contrast dye finally caught up to his system and he was in the hospital from Dec. 17-27 in complete renal & heart failure. In the ER, a doctor(and I use the term lightly) insisted forcing a catheter into him despite his protests. The attempt was unsuccessful due to scar tissue from a previous surgery, but did manage to almost completely shut off his bladder opening.

On Jan. 16, we made it back to MDA for another CT/PET w/o contrast dye which showed the cancer growing and he needed a lung biposy to determine if it was the same cancer.

On Jan. 21-27, he was again hospitalized for renal failure compounded now by the inability to fully urinate which was caused by the attempted catheter insertion in Dec. At this time, a lung biopsy was done & it was determined that the cancer was was a very aggressive seconday cancer and not a met from the H&N cancer.

On Feb. 6, we had a consultaion with a radiologist at MDA. It was decided to attack the lung first, concurrently with chemo. However the chemo was postponed because urination was almost now non-existant. So I selected a Urologist.

On Feb. 7, we had a consultation with a Urologist who was unable to complete his test and scheduled Ron for surgery.

Radiation was still a "go", so on Feb. 13, he had his radiation mapping done.

On Feb 22, he had bladder surgery.

On Feb. 26, with surgery catheter still in tow, he had 13 teeth removed, a chemo port and a G-tube for feeding put in.

On Feb 28- Mar. 8, he had radiation treatments on his lung.

On Mar. 14 during a consultation with an Internest @ MDA, his G-tube site began to bleed profusely. A nurse stopped the bleeding & we went home. As he exited the truck, the bleeding began again. I drove back to the hospital and he was seen in the ER. After a couple of hours, the bleeding stopped and we went home. We were home for a few hours and the blood started really gushing this time & I could not stop it so I called an ambulance which took him to the nearby hospital. Finally after several hours, a surgeon was called in to put in temporary stitches.

On Mar. 31, a couple of days after the temp. stitches were removed, the gushing blood started again. He was again taken by ambulance to the nearby ER where permamnent stitches were put in. That finally stopped the bleeding problem.

On Apr. 1, he was finally able to get his first 7 hr. chemo session which resulted in a teriible reaction to the Benadryl given pre-chemo.

On Apr. 8, he got his second chemo infusion which completed the cycle of his rapidly falling white blood count. He slept the entire next day.

On April 10, he was lethargic, disoriented, and unable to stand. He was taken by ambulance to the nearby hospital where it was determined that his WBC was destroyed and he had turned septic. He spent Apr. 10-23 in that hospital where they altered his long term meds to the point that congestive heart failure took over.

When he was discharged on the afternoon of Apr. 23, he was actually in congestive heart failure. That evening, I took him myself to the hospital where his Cardio practices.

From April 23-May 4, they tried everything but could not reverse the damage that had been done at the previous hospital. While I was home for a few hours, he vomited & aspirated into his lungs and was put on a ventilator. All of his sytems then began to shut down.

I was able to reach my daughter who lives 2,000 miles away & she & her husband drove thirty hours straight to get here. Although Ron was semi-conscious, he recognized her presence & I know he understood how serious the situation was.

We held onto hope for four days before making the decision to remove him from life support. It was the hardest decision I have ever made.

Am I mad? Yes, I am DAM MAD. So many mistakes by the medical professionals that we are supposed to trust. I can't stand here & say that they caused his death, but they certainly hurried it along.

Now back to the first part of my chaotic story. During the time all this was happening, my daughter's doctor decided that by removing her spleen, her WBC would rise, and although she would no longer have an immune system, she could restart chemo. While off chemo, her lungs tumors had grown from a quantity of 4 to 38, a non-operable condition, but she still might have a chance with chemo again. So, Ron's sacrifice did not make her cancer "go away", but it gave her a fighting chance. You can be the judge of that one, yourselves. Was it just a coincidence or an act of true faith?

I'm sorry this was so long & probably TMI for you all, but I just wanted you to know what led me here. Some day, I may be able to actually have an intelligent conversation without tears running down my face.

Karen

[enna]

Dear, dear Karen - that is exactly why we are here - your grief journey becomes ours. We share our pain, happiness, and wacky personalities when we are here. Everything about YOU is important to us and nothing is ever too long. All of us here cry. All of us here know that we are accepted for just who we are. Thank you for joining our 'sacred' group. I am so sorry that you have had to go through all this pain. Anne

[mfh]

Oh Karen, that sad story complete with so many painful and life threatening medical errors leaves me feeling sad and exhausted on your behalf...I am so sorry that you and Ron had to be subjected to poor medical care when dealing with cancer was more than anyone should have to deal with. I could just feel your exasperation and exhaustion as you traipsed about to all those appointments only to watch things just get worse. I am sorry. No story is too long. This is a place with listening ears and hearts. Not too many places like this in our lives.

As for why Ron got cancer, I have no trouble believing that possibility. I think it was Swami Rama, who in front of a group of MDs years ago meditated a growth from the arm of one MD to his own arm and then healed his own arm. All things are possible...

Do feel free to share your story as you wish and need. You are safe here.

Peace and I hope you might be sleeping by now.

Mary

[Wifflesnook]

Oh Karen

I just read your story. What can I say? You must be so sad and angry. We share all our feelings here as you will have gathered. No story is too long or too hard. Jan

[KarenK]

It truly was exhausting to write all that as I mentally relived each moment, but it was important to me to just "get it out" and share it with those who might understand. I'm sure that my trauma is no more severe than any of yours here. We were in a 24/7 race against time for 6 months and lost that race. At first, it was hard to realize that the race had ended and that I was no longer responsible for another person's well being. You see, I have been taking care of "someone" since I was 16 years old when my daughter was born. My son was born when she was 14, so I started all over again. When my son was 7, Ron's illnesses began, and then when my son was 16, his son was born. My son has been a single parent(with Mom & Dad's help) since that time. His girlfriend thought that Motherhood ended when she got off the delivery table and has never looked back. My grandson is now 18. It looks like I have finally reached the end of my "caregiving" days. I would not trade a moment of them.

I suppose that logic tells me that it is better that the race ended when it did. If Ron had somehow survived all that, he would still have faced the brutal H&N radiation treatments which are among the worst for cancer patients. In his case, no surgery was possible due to the location and all his other medical conditions. Since I was not in his head, I can only assume that his passing was peaceful, in it's own way and he was able to skip the rest of the agony. I try to think of this as a positive thing, but as you know, your heart knows no logic.

The night that he died was very hard as I lay next to the empty bed provided by Hospice which was now devoid of sheets, but could not be picked up for a couple of days. I don't know if anyone else did this, but I cleaned out all the meds & supplements that he had been taking for so many years to ward off illness. I could not stand to look at them. I just wanted to remember the "good" times.

I guess it was kind of nasty, but I took all the prescription drugs to the local hospital and told them that since they had disposed of my husband, they could now dispose of these drugs. Then I walked out. A couple of days after laying him to rest, I donated the remainder of the diabetic supplies, insulin and the three unopened cases of "tube" food to a local charity clinic where, at least, someone could get some good out of this tragedy. As I left, of course the random thought hit that I could not give these things away because they were keeping him alive, but my heart knew he was no longer going to need them.

I am starting to try and get my "new" life together with the help and support of my children and now all of you. One day at a time, with one foot in front of the other. It's the best I can do right now.

Karen

[feralfae]

Dear Karen,

I am so very sorry for your loss of your Beloved Ron. You have been through too much. You are still going through too much. I hope you can let out your grief, sadness, anger, and frustrations here enough so that you can walk through the days with a little peace. If there is one thing this place has given me, it is a sense of peace. Not all the time, and not about some things, but peace. I have come to appreciate even ten minutes of peace. Meditation helps a lot.

My story with my husband Doug is about the same, with emergency flights to find doctors, traveling across the country for treatments, desperation, confusion, loss of trust in the medical profession, the pharma corporations, and in many hospitals. The mistakes were countless, and led to so much pain and frustration. Although we were able to rescue Doug from many bad situations and hospitals, we could not stop the spread of the cancer which began as colon cancer and before he left, had moved into much of his body. After more than three years or treatments, mistreatments, confusion, moving to other clinics and hospitals, and even enrolling in clinical trials in other countries, Doug escaped 17 months ago, on 7 February, 2012. We had many loving and caring people helping us, and Hospice was truly our salvation the last week, when Doug wanted only to come home from a hospital, and be in our bed with me. Hospice made that possible for us to be together constantly the last week, and to share, love, touch, and pray together while we said, not "Goodbye" but "See you Soon" to each other in so many ways.

I wrote so many angry letters. Most of them I tore up and burned, but it felt good to let it out. If you have not done so, it might help to articulate your anger and frustration. I hope you have a good grief counselor. Try to find one not part of the hospitals that let you down, because I tried one here with the hospital, and she kept trying to negate my anger and frustration with her co-workers. You need someone who will listen to your story, no matter what.

And we will listen here. You are going through a lot, as are many of us, and we will share our strength on the days we have any to share, and reach out for a help on days when we feel about to collapse. This is a true roller coaster ride. We make it one day at a time, and sometimes one hour at a time. Even though there have been times when I was ready to leave and escape the pain and loss, I know that I am still here because I am meant to be here, living.

Finding this fire, this Tribe, this wonderful place that Marty has provided for us, has saved my sanity. And thanks to some amazing *<Angels>* who have found each other somehow on our journeys, this place has brought people into my life who have helped to heal my heart and make me feel some hope again. I am so very glad you have found this fire, and this tribe, and yes, we take it one day at a time, trying to be present with our own loss, grief, pain, and healing. The loving, caring, compassionate people here will be a true gift to your grieving heart.

I am so very sorry for you journey and your loss of Ron. We can go on, and it will hurt less sometime in the future, although that may not seem possible yet.

We are here with you, and holding you in our hearts as you make this most difficult and painful journey through grief.

Blessings, and *<fairy dust>*

fae

[mfh]

Karen, I do agree so much with fae's suggestion that you write....I find it helpful to write my pain and confusion and frustration and fears in my journal, to share here and I write letters to Bill in my journal also.

As for writing to the hospital that let us down in so many ways, I still have all that paperwork as I felt too depleted to deal with it and the cynical part of me knows it will not do one thing to change anything but someday I may get the papers out and write it. In hind site the hospital stay was a mistake and like you, Karen, I know it sped up his death and removed him from the misery he was living so in that regard I am relieved on his behalf but that does nothing to excuse what happened.

It takes a while to find our paths, Karen...try not to rush the journey...just be in each day as best you can and the road will slowly but surely unfold. I still do not have a grasp on my "new life' unless this is it and maybe it is. But I hope to put more meaning into life than I experience now. One day at a time...patience is the name of the game.

Mary

[kayc]

Karen,

My heart breaks at your story, all of the suffering your husband endured, and you right along with him...and your daughter too! I have no answer for the "why" these things happen, some think everything happens for a reason but I gave up looking for a reason years ago and accept that things happen and we're left to deal with it as best as we can. To people who say "it's God's will", I say, Bunk! They wouldn't know "God's will" if it hit them on the head! Anyway, I am just so sorry you have gone through so much and I understand about the caregiving for I too have gone through so much in my life and I've found that taking care of ourselves seems to be the greatest challenge, but I've learned to since George died for there's no one else to do it.

Noone here will argue your being angry, you have every right to be and sometimes we have to let ourselves feel the anger before we can go any further in our journey. You certainly have enough to feel mad about!

You will receive caring here, for we've all been through the same thing...just different details and circumstances.

[MartyT]

My dear Karen, I've finally had time to go back and read your story from the beginning, and of course I have no words. I am so very sorry to learn all that you and your dear husband, and your precious daughter as well, have been going through. What you've endured is more than any person ought to bear. Please know that you've managed to find your way to a circle of healing, compassion, companionship, and peace ~ and for that I am very grateful. We cannot change a thing that's happened up to now for you, but we certainly can walk with you the rest of the way, and assure you that you are not alone. You are one of us now, and we are here for you, just as you are here for all of us. ♥

[KarenK]

Hello My Friends,

I searched and searched through all of our photo albumns to find a picture of myself and Ron. We've done a lot of traveling throughout the southwestern USA and I have many beautiful scenic momentos, but not one of the two of us together. One of us was always taking the picture. With my limited computer knowledge, I managed to scan & size this one of me. It will have to do. This was taken ouside a small store in Zuni, NM. The local artist had painted beautiful murals on the building. He also paints drums and over the years, I have purchased a half dozen. I love Native American art, jewelry, & pottery.

I wanted to share something that my daughter sent to me. She has been helping to clean out the home of a relative near her who can no longer live alone, and she found this among some old papers. Many of you may already be familiar with it.

God saw he was getting tired and a cure was not to be
So He put His arms around him and whispered"Come with Me"
With tearful eyes we watched him and saw him fade away
Although we loved him dearly we could not make him stay
A golden heart stopped beating, hard working hands to rest
God broke our hearts to prove to us
He only takes the best!

Karen

[enna]

I love your smile in the avetar you are using. The quote above is one of my favorites. I have been journaling since my Jim died last May. Whether it be conversational or just thoughts I usually write them down and them go back and read what I wrote. I've had to smile at some of the silly things I find. The most comforting thing about writing to me is that it's like I'm still having conversations with Jim. It surprises me to see the number of emotions one can bring up when one is grieving. I am slowly learning that over time some of the dark, hurtful emotions are moving more into the background and the lighter more pleasant ones are taking their place. I am remembering more of the joyous times Jim and I had together rather than only focusing on his last few years before he died.

Events like tubing down Salt River (at our age) or hiking down the Grand Canyon at the Bright Angel Trail spot! Jim is still with me every day only not as I really would like him to be. It is good to have you here. Anne

[mfh]

Hi Karen,

Great to see what you look like...perhaps sometime when you feel like it you can also post a picture of Ron...you can put pictures in these posts. I, too, love the southwest and Native American art and jewelry. In Sedona we spent time in Worrell's gallery and he is in NM also. Amazing art. http://www.billworrell.com/wall-sculpture.html%C2'>

I do love the poem your daughter sent to you and thank you for sharing it.

Mary