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Posted by: nomonomo ( )
Date: September 02, 2017 12:18AM

I haven't been posting much in the last 18 months or so, because Mrs. Nomonomo has been sick. I'm sorry to say that she passed away about ten days ago. She fought bravely, remained positive to the end, and never lost her sense of humor.

Two years ago she started having strange symptoms that got worse and worse. When she got checked out, we learned that she had anemia, that in turn was due to blood loss from a bleeding cyst on an ovary. She also had a large (benign) fibroid tumor in her uterus, and endometriosis.

During a physical exam related to the above, her gynecologist spotted a little speck of cancer on her cervix, and sent us to an Oncological Gynecologist. He said it was small, "early," Stage 1, "very curable," etc. In spite of it's size, the "cure" was the same: radiation for several weeks, with a light chemotherapy for good measure. That was followed up by Brachytherapy, which is also radiation but administered internally.

After that, however, they determined that the radiation didn't work. The cancer had continued to grow, and the radiation had done more damage than good. The next step was a radical hysterectomy. The radiation left a lot damage, and she also needed to have two nephrostomy tubes placed to keep her kidneys functioning (one tube was removed after seven weeks; the other remained in place until she died).

The surgeon said he thought he'd gotten all the cancer, but said that if it had already metastasized, then it would come back, and that if it did, she wouldn't last two years. The plan was for her to remain in the hospital one night for observation, but there were so many complications associated with the hysterectomy that she remained for six days, and multiple return visits totaling about 20 days. Additionally, between the hospital visits and the radiation, she had been essentially bed-ridden for about six weeks, so she required home nursing and physical therapy to recover. She also ended up loosing more and more blood through the nephrostomy tube, because it wore through the wall of an artery! When that was fixed, though, she rebounded and had a great summer.

Of course, the threat of the cancer returning loomed overhead, and, sure enough, it came back in a few months. At that point, she started a regimen of chemotherapy. It worked initially, but it also compromised her immune system, and she repeatedly developed highly resistant infections. Three times we returned to the hospital for 14 days of antibiotic infusions, so six weeks total.

The chemotherapy worked for a while, but then stopped working, so it was terminated. Since the chemotherapy was stopped, though, the infections stopped as well. Her Oncologist found a clinical trial in which she could participate. It was an immunotherapy regimen, and that excited her because she'd been reading about them. Like the chemotherapy, it worked partially. There were about six things in her lungs, and pelvic and abdominal areas that they were measuring regularly. 3 got smaller, 2 stayed the same, but one continued to grow.

By this past May the cancer was working its way into her G.I. tract, and she started to suffer from bowel obstructions. She ended up in the hospital twice in June, once for 5 days and the next for 6.

After the second hospital visit, she was losing strength. She never returned to the second floor of our house. She needed a walker, but could get around ok. They also put her on intravenous food and we managed to stave off the obstructions for a month, but in early August she had another one. The bowel obstruction cleared, but they explained that they had run out of medical options, other than treating her symptoms and pain. So, after seven days in the hospital, we transferred to a hospice center.

In the ambulance ride over, she could hold a normal conversation, but she continued downhill pretty quickly. The first few days she could get up and move around some. Towards the end she was determined to get up several times a day and try to exercise a little, as if not to give up. In the last few days it was only rocking side to side and counting to four repeatedly. The second to last day she'd only sit on the edge of the bed. The last day she never got up.

Up until about the last three days she could talk, although she wasn't holding conversations. After that, we worked out a system where she could blink her eyes multiple times for yes, and once for no. On the last full day she never really responded at all.

After two weeks there, she passed peacefully in her sleep at 12:28 a.m.

In total, she spent 71 days in the hospital due to complications, plus the six weeks of outpatient antibiotic infusions. And, of course, that was on top of all the various forms of radiation and chemotherapy.

It's been ten days, and I still can't believe she's gone. Things had steadily snowballed over time, and I realized that I felt some peace after returning home, but it occurred to me then how miserable she must have been in those last days.

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Posted by: LeftTheMorg ( )
Date: September 02, 2017 12:29AM

I'm so very sorry to hear about losing her. The struggle she had just amazes me. Those are true difficulties. My condolences to you, you've suffered a huge loss.

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Posted by: sunnynomo ( )
Date: September 02, 2017 12:44AM

I'm so very sorry for your loss. I hope peace finds you soon.

-Sunny

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Posted by: BYU Boner ( )
Date: September 02, 2017 12:54AM

I'm so sorry to read about what happened. Cancer is so brutal. You were by her side through the tragedy and did everything possible. Hugs, peace, and comfort for you and your loved ones.

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Posted by: Tevai ( )
Date: September 02, 2017 12:57AM

I am glad that your wife is no longer in pain (I have been primary caregiver to two family members)...

...and I am so sorry for your immense loss.

I hope that the time which is unfolding just ahead of you right now will go as smoothly as is possible.

I cannot even imagine what you must be feeling right now.

I am so sorry.

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Posted by: bradley ( )
Date: September 02, 2017 01:05AM

I'm sorry for your loss. I'm sure glad cancer will be eradicated within the next 10 years. Chemo and radiation and surgery really need to go.

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Posted by: nomonomo ( )
Date: September 04, 2017 12:44PM

Thanks. Yeah, chemo and radiation are pretty hard on the body (I've had radiation therapy myself, so know from experience).

As anyone can imagine, she did a lot of reading about cancer and treatments. She was excited about immunotherapy, and--before her chemo started--was actually accepted into a clinical trial specifically for metastasized cervical cancer. Sadly, she was dropped before it even started, along with roughly half the participants, because the biopsy requirements had been written so optimistically/stringently that very few patients' samples were sufficient. It would take to long to wait on a re-write to be approved, so she started chemo therapy instead. We learned ultimately that the study had been cancelled altogether (although, presumably it will be re-written, but too late for her, obviously).

She was also excited about the clinical trial she ultimately got into, after chemo stopped working. Not only because it was modern and state of the art, but because it was really her only option at that point. It wasn't for her type of cancer specifically, but for "hard tumors." It did work in part, and shows promise in general.

Anyway, I hope that her participation in the clinical trial will have served a greater purpose.

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Posted by: GNPE ( )
Date: September 02, 2017 01:19AM

I'm reading that there was Love in your hearts, and on tha t I'm glad for you...

Love, which includes Honesty & Kindness, doesn't need excuses or apologies, it's great to Feel & Share.

For that part, thanks for sharing your story, everyone here is glad for what you had.

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Posted by: catnip ( )
Date: September 02, 2017 01:25AM

You both fought The Good Fight. I'm so sorry there wasn't a happier ending. The way you told your story speaks volumes about who the two of you were, as a couple.

I hope that you can find some consolation in knowing that the two of you were a great team. So many couples can't say as much.

Take care of yourself now, and post when you need to. You know that we are here for you.

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Posted by: Kathleen ( )
Date: September 02, 2017 01:33AM

I am so, so sorry! Oh, the pain and loss people here are experiencing!

Peace and love and healing for you and your family.

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Posted by: toad ( )
Date: September 02, 2017 03:06AM

Love and light to you and your warrior lady. I hope you find peace in your struggles and comfort in your memories.

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Posted by: pugsly ( )
Date: September 02, 2017 03:32AM

So sorry for your loss.

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Posted by: Soft Machine ( )
Date: September 02, 2017 03:46AM

Very sad for you. Sincere condolences.

Tom in Paris

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Posted by: nomonomo ( )
Date: September 04, 2017 12:52PM

Merci beaucoup

Mme. Nomonomo worked for the World Bank, and worked for a while in the Paris office. She was fluent in French.

I worked in the French part of Switzerland for a couple of years. Sadly, my French was much rougher than hers.

We both loved France, and Paris, but sadly never visited together. This summer was actually a sort of juncture in time for us. Our youngest graduated from high school, and we had been thinking it would open up options for us: move closer into D.C., or move to some small college town somewhere, or even move overseas again.

The Paris office (for her) was high on our list of possibilities.

Sadly, I have options now that I don't really want, and she doesn't have any. :(

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Posted by: anonuk ( )
Date: September 02, 2017 05:13AM

best wishes adapting to your massive change of circumstances. It will take time to adjust to being a widower and finding a new way of living with only memories. Try not to focus on her painful end as I assume she had plenty pain control, but ultimately she chose to try medicine to beat it and prolong her time; to stay with you. This is evidenced by her researching new treatments.

She is no longer in any pain and wherever her soul/essence may be now, her love for you still lives; that will never die and you will carry that with you til you join her in either oblivion or the next life, whichever is reality.

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Posted by: nomonomo ( )
Date: September 04, 2017 12:57PM

Thanks. She had been in chronic pain, including overwhelming waves of breakthrough pain. She was taking ever-increasing doses of multiple kinds of pain medicine, but mostly Oxycontin and Oxycodone (same stuff, but slow release and quick release, as needed).

Her pain was managed by a Palliative doctor for more than a year, and very well-managed at the end.

She's definitely out of pain now, and I believe in a much better place.

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Posted by: mrsnotasiplanned ( )
Date: September 02, 2017 05:39AM

I'm so sorry she had to go through that suffering, and am sorry too for your great loss.

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Posted by: summer ( )
Date: September 02, 2017 07:11AM

I'm so terribly sorry for your loss. It sounds like you were a good companion and supporter for her right up until the end.

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Posted by: frankie ( )
Date: September 02, 2017 08:14AM

I so sorry !! She had a tough time with the disease. Sounds so painful. My most sincerest condolences. Grieve and receive emotional support and live in the present.

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Posted by: Amyjo ( )
Date: September 02, 2017 08:58AM

Condolences to you and your loved ones.

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Posted by: Eric K ( )
Date: September 02, 2017 09:03AM

I am so sorry for your loss. We have had several close friends pass away in similar circumstances and can only imagine what you have experienced. Life is so precious. Sending our thoughts to you.

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Posted by: incognitotoday ( )
Date: September 02, 2017 09:34AM

Wow, my friend. You are in my heart. I sincerely hope you have friends and others who love you right now. Been shedding some tears. You can come to my home if you need a place to sort things out. Never met you, but I love you.

teddy

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Posted by: nomonomo ( )
Date: September 04, 2017 12:59PM

Thanks, we've had a really great support network going. Her friend's and colleagues have been incredible, and my friends too. Needless to say, my family has been kept at arm's length (and largely in the dark too).

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Posted by: nomonomo ( )
Date: September 04, 2017 01:01PM

Oh, and her family, although it's been difficult since they live overseas. But her mom spent 12 of the 18 most critical months with us, and was her at the end (as was her dad and brother).

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Posted by: Anon370H55V ( )
Date: September 02, 2017 09:47AM

I am so sorry. I know that there isn't anything I can say to ease your pain, but my heart is aching with yours.

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Posted by: dagny ( )
Date: September 02, 2017 10:43AM

Best thoughts for you. Difficult times and few words.

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Posted by: anonsometimes ( )
Date: September 02, 2017 10:43AM

I am sorry for your loss. I hope that you keep posting here and are receiving lots of support. Thanks for sharing your experience. Your story could save other lives with the reminder for early detection and treatment. Wishing you all the best.

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Posted by: Bite Me ( )
Date: September 02, 2017 12:30PM

I'm so sorry, nomonomo. Condolences to you and your family. Peace.

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Posted by: boilerluv ( )
Date: September 02, 2017 12:34PM

So very sorry for your loss. What a miserable time you and she had to do through. Cancer sucks! I'm sure your wife was more than grateful for your continued love and support, and I'm very sorry for you both that it was so long and drawn out and complicated. I hope you'll take care of yourself now, as she would want you to, and do whatever it takes to help relieve some of your grief and pain. Big warm hugs to you!

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Posted by: NeverMoJohn ( )
Date: September 02, 2017 12:46PM

I am so sorry. It sounds like you two had a special relationship.

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Posted by: Paintingnotloggedin ( )
Date: September 02, 2017 12:52PM

Nor hearts cannot tell the heroic narrative of true loves spell.

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Posted by: Laban's Head ( )
Date: September 02, 2017 01:40PM

So very sorry. Wishing you peace.

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Posted by: Tyrrhenia ( )
Date: September 02, 2017 01:50PM

What a terrible time and suffering she had to go through...
So sorry for your loss...

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Posted by: Devoted Exmo ( )
Date: September 02, 2017 02:05PM

She was lucky to have you by her side and she sounds like a terrific lady. I'm so sorry for your immense loss. I hope you give yourself plenty of time to process this. Hugs to you.

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Posted by: MRM ( )
Date: September 02, 2017 02:12PM

So Sorry

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Posted by: kativicky ( )
Date: September 02, 2017 04:00PM

I am so sorry to hear that about your wife. Please accept my heartfelt condolences.

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Posted by: laurad ( )
Date: September 02, 2017 04:43PM

I'm so sorry.

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Posted by: adamisfree2006 ( )
Date: September 03, 2017 04:52PM

I am very sorry to hear this. I wish you peace and comfort during this tough time.

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Posted by: Kendal Mint Cake ( )
Date: September 03, 2017 05:21PM

Sending you love. I'm glad that your dear wife is no longer suffering, and that she had you to support her.

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Posted by: Greyfort ( )
Date: September 03, 2017 05:30PM

I'm very sorry to hear what you and your wife have been through over the past few years and for your loss.

My Dad died in July, only 12 days after being diagnosed with cancer. I have a feeling that I'm going to eventually be grateful that it was very quick, even if I barely had time to react to the news, never mind adjust to it.

I too have had the benign fibroid tumour, the endometriosis and I had developing uterine cancer. They took everything out.

In this day and age, you'd think they'd be able to cure this stuff, but they only seem to be fighting a losing battle.

All you can do now is take things one day at a time. I'm finding that to be the case anyway. Since losing my Dad, I find that trying to look too far ahead is simply overwhelming.

Be good to yourself and just take things one day. Sometimes it's only one moment at a time. *HUGS*

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Posted by: nomonomo ( )
Date: September 04, 2017 01:40PM

Thanks. Yeah, you'd think they could cure it. Even after her chemo worked for a while, and then stopped working, the Oncologist pointed out that nothing works forever...

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Posted by: SusieQ#1 ( )
Date: September 03, 2017 07:01PM

So sorry for your loss and the long road to the end. You're starting your "new normal"! I lost my husband Jan 12 2013 after declining health. Take it one day at a time. Works for me!
Best wishes.

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Posted by: cinda ( )
Date: September 03, 2017 07:16PM

Sincere condolences to you. May happy memories of better times help you to get through this most difficult time.

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Posted by: cutekitty ( )
Date: September 03, 2017 07:54PM

You were brave for her, as she was.

My mom passed, staring at me. She just stopped her excruciating suffering. I have to believe, even in a non-lds way, she is not suffering anymore and 'in a better place!"
She, also, had a gruesome end. Her invisible, life energy continues to exist, somewhere. Laws of physics. It can't be destroyed, it just takes on new forms and shapes (of energy). That's why we get cold when we die. 7degrees leaves our body temperature when we pass over. That is energy.

It is good you weren't a creep when your dear wife got sick and leave. Thank you for that. Some people can't handle less than perfection.
That's the way were programmed in the morg. You showed compassion when she needed you. Best wishes for a sunnier day ahead.

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Posted by: nomonomo ( )
Date: September 04, 2017 01:50PM

Yes, I believe she's in a better place. Fortunately, she passed in her sleep.

Each of many days near the end I'd think, "this must be it," and it wasn't. And I'd think "it can't possibly get worse," but it did.

In the last couple of days, it was difficult to keep up a one-sided conversation. You can only say "I love you, and I'm proud of you," so many times, or "I'm sorry I didn't do X, Y, and Z," or "I'm sorry I DID do A, B and C." But I tried to talk to her as much as I could. She loved music, and singing, so at times I'd sing to her out of a hymnal I borrowed out of the chapel. Before she deteriorated too badly, she'd try to sing along. On the last night, at the end of one hymn, I looked up and she'd stopped breathing. And that was it.

They said it was ultimately sepsis that did her in (after two weeks in the hospice center), and they explained that it didn't add any pain. And for that I'm thankful.

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Posted by: cutekitty ( )
Date: September 04, 2017 02:07PM

My heart is breaking in 2 4 U right now. I know right where you r at.

My mom's been gone 22 years this x-mas. It still feels like yesterday. That morning, she woke me off the couch with a rattly cough, in the baby monitor.... I went in the bathroom before she passed, and yelled at gawd, 'please, don't let her suffer!', like she could suffer another thing. Within 5 min. it was over. She was screaming at me with her eyes- to help her. I couldn't do a thing. She just left the building, like Elvis...
She was half my heart...

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Posted by: NormaRae ( )
Date: September 03, 2017 09:01PM

I'm so sorry to hear this. She sure had a fight on her hands and Cancer sucks so badly. No one should have to endure that. I wish nothing but peace and love to you and your family.

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Posted by: Susan I/S ( )
Date: September 03, 2017 09:12PM

And I know that the most important thing to her was that you were with her. Please take care of yourself during this very difficult time. Take it one bridge at a time and don't think about the next one. EAT. Even if you have to force it down. If you can't sleep, just rest with your eyes closed. Give yourself some time. Thank you so much for sharing your heart with us.

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Posted by: Garçon ( )
Date: September 04, 2017 01:16PM

I have been a widower for 5 years now. Time changes stuff. Be very mindful of any advice given - even mine. Mourn and cope your own way. No one else has to understand or agree. The next 6 - 12 months would be best approached with care and caution. Peace my friend, you are so tender right now, my heart breaks for you - and you are a stranger; so imagine the love your family and friends have for you.

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Posted by: Elder Berry ( )
Date: September 04, 2017 01:46PM

Garçon Wrote:
-------------------------------------------------------
> Time
> changes stuff.

But not the power of the love you have for her nomonomo. I feel for your loss. I'm sorry it was so hard for her.

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Posted by: nomonomo ( )
Date: September 04, 2017 02:06PM

Thanks for the kind words, everyone. I wish I could reply individually to each of you.

Taking things one day at a time, all the way through her treatment, became my mantra, and for the time being, that's what I'm still doing.

I loved her dearly. I still do. I can count on one hand the number of times we were apart over the years, and probably on two hands the total number of days.

In her second-to-last hospital stay, she started experiencing anxiety attacks, and would ask me repeatedly not to leave her. Through the next month at home, it got worse, and by the time she had her last hospital visit it had evolved into delirium. She actually rebounded the last two days at the hospital, when they focused solely on her symptoms and quit treating the illness, and even improved initially in the hospice center. I'd forget at times that the cancer was still running unchecked, and have moments of hope. But after several days she turned downhill again.

Anyway, when she asked me not to leave her, I promised her I wouldn't. In the next seven weeks, I hardly left her side. And I was there at the end.

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Posted by: cutekitty ( )
Date: September 04, 2017 02:12PM

She was a lucky woman to have you.
Thanks again for not being a creep and running away from her. Happens to the best. People don't think about the sickness and health part when they get married.

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Posted by: nomonomo ( )
Date: September 04, 2017 02:24PM

I forgot to comment on the running away part earlier. The head doctor at the hospice center told me that I'd be surprised how many people run away. I'm not sure how we got onto that topic, but one of the nurses there told me that Mrs. Nomonomo's records that came to them from the hospital were marked: "extremely devoted husband." She said there was no better annotation.

I just felt like I was doing what I had to do. What I needed to do. Never felt like I had a choice, per se.

People have said they can't see how I could do it. I'd tell them not to sell themselves short. It's amazing what you can do when you have no other choice.

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Posted by: Greyfort ( )
Date: September 04, 2017 04:47PM

nomonomo Wrote:
-------------------------------------------------------
> It's amazing what you can do when you have no other
> choice.


I sure found that one out myself.

That's a really sweet annotation though. I love it.

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Posted by: Cheryl ( )
Date: September 04, 2017 05:38PM

My thoughts are with you in this time of need.

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Posted by: cludgie ( )
Date: September 04, 2017 07:26PM

So very sorry to hear this, and so very sorry every time I learn about one suffering from cancer and its treatment. I hope you are well, and that someone is there to help you through this.

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Posted by: Beth ( )
Date: September 05, 2017 01:25AM

When great trees fall,
rocks on distant hills shudder,
lions hunker down
in tall grasses,
and even elephants
lumber after safety.

When great trees fall
in forests,
small things recoil into silence,
their senses
eroded beyond fear.

When great souls die,
the air around us becomes
light, rare, sterile.
We breathe, briefly.
Our eyes, briefly,
see with
a hurtful clarity.
Our memory, suddenly sharpened,
examines,
gnaws on kind words
unsaid,
promised walks
never taken.

Great souls die and
our reality, bound to
them, takes leave of us.
Our souls,
dependent upon their
nurture,
now shrink, wizened.
Our minds, formed
and informed by their
radiance,
fall away.
We are not so much maddened
as reduced to the unutterable ignorance
of dark, cold
caves.

And when great souls die,
after a period peace blooms,
slowly and always
irregularly. Spaces fill
with a kind of
soothing electric vibration.
Our senses, restored, never
to be the same, whisper to us.
They existed. They existed.
We can be. Be and be
better. For they existed.



-Maya Angelou



Edited 1 time(s). Last edit at 09/05/2017 01:37AM by Beth.

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Posted by: stellam ( )
Date: September 05, 2017 07:24AM

Sending much love. I'm so sorry.

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Posted by: anybody ( )
Date: September 05, 2017 07:33AM


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Posted by: nomonomo ( )
Date: September 14, 2017 11:54PM

Thanks again for the kind words, everyone!

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Posted by: escapee nli ( )
Date: September 15, 2017 01:14AM

We lost my brother in law to leukemia in February, after a 2 year battle.

I am sorry to know you lost your wife. Cancer stinks. I hope our messages comfort you in some small way.

Other Susan

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Posted by: Tevai ( )
Date: September 15, 2017 01:27AM

I am so sorry, nomonomo.

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Posted by: MinnRN ( )
Date: September 15, 2017 01:54AM

Your wife was so fortunate to have you. Everyone deserves to be treated so well when they are dying, but few are. I hope the anguish is easing a little each day.

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