Fig
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Post by Fig on Jan 24, 2014 0:06:43 GMT
Mansons,
Your posts were brought to my attention just this morning by an email notification. Not sure why it didn't notify me yesterday of the post from Tuesday evening, but... I just wanted to say that, once again, words are almost failing me. Your writing comes across with such life and energy, although the content of your post is so life-shattering and energy-sapping. I've been thinking about you lately and wondering how you were doing, since you only occasionally have posted to the eBay boards. -- And I can understand some reasons for your absence. It must be taking a lot of your energy to think about this, process it, live with it, and (I hope) to fight it as best you can. Is there anything I can do? It may sound like an empty gesture, online ... and not living close enough to really help in person. Do you have somebody who can provide a support system for you? I know that you know lots of people... but relationships are not always close enough.
I have the problem here in Iowa that there is almost nobody in the area where I live that I know well enough to ask to take me to medical appointments if I were not able to drive there. I have lots of family and some close friends, but none in this area. I could ask others but hate to impose on "friendly acquaintances" who are not very close. ... Anyway, I hope you have a better support nearby.
I'll be thinking of you now, and especially on February 3. Where will you be having the surgery? (Remember I used to live in Chicago so will probably know which facility you are talking about.)
Fig
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Post by bookahtoo on Jan 24, 2014 1:39:14 GMT
I can't even imagine myself in your position Mansons. I wish I had something helpful to say - but I don't. Oh my god - I'm embarrassing myself. I used to be less inarticulate. I'll try again later.
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Post by Mansons2005 on Jan 24, 2014 2:16:08 GMT
Ah, Fig - you have given me a soap box to orate from! When this pain became unbearable I realized that I had "run through" most of the emergency rooms and clinics in Chicago and owed them SO much money, that I was "forced" to go to Cook County (Stroger) hospital. Yep. the charity wards................. BUT!
Not only was the care on a par or better than I have received in some of the most prestigious facilities, I am so AMAZED by the people! The politically correct can demand an apology later - I have to get this out there. The entire staff is comprised of people from ethnic minorities -- 99.9% of them are stereotypical in manner and dress..........enough so that at first I was trying to resign my self to fighting and arguing with EVERYONE for even a glass of water. But boy, was I slapped in the face................ Even the most truculent looking guy mopping the floor would smile and drop the mop and run for assistance when I asked for directions. EVERY single member of the support staff was amazing in their cheerful willingness, patience, and competence.
The medical staff (Doctors, specialists, etc.) are brusk and a bit short on "bedside" manner - but remember - they are professionals with private practices that do a "pro bono" day a week (my oncologist does two days a week - Monday for surgeries, Tuesday for consultations and examinations). There is a reason that Stroger is considered one of the best teaching hospitals in the Midwest...........
The hospital itself (only a decade old) is plain but very clean (the cleaning people are EVERYWHERE - CONSTANTLY), very well organized and within the strictures of "modern health care" extremely efficient. No, there was no sprig of parsley on the rubber chicken I had for dinner - but the chicken was the same as served at the Mayo Clinic (though I was threatening to murder any farmer that voluntarily grew broccoli by the time I left - they serve it with EVERY MEAL).
Bottom line - even if I had a fortune to spend at my discretion on health care, I would probably spend it at Stroger right now. I am beyond impressed, I am flabbergasted. I had heard only good things about the facility from the homeless guys I work with - they have no other options. But like many (most?) my thought was "A charity hospital? How good can it be? YUCK!"
Chicago politicos can squeak and squawk all they want about nepotism and graft and corruption within the County Health Care System - it WORKS! And it works for the people who need it - not only supplying them with excellent medical care, but also giving them a bit of dignity and compassion. I wish THEY had a kudos button..............
Okay - done pontificating..........
Thank you for your kind offer of assistance. It means a lot under the circumstances. But as usual, surprising things pop up when you really need them. As stated (probably way too often) I have no family and no real friends left. As the fates would have it though, my one remaining friend and her husband (who live abroad)have recently been temporarily posted back to the States - and while they are posted in another state, they have to be at the Chicago office often and at their discretion - YEAH!
And my principle employer, whom I have considered a "good acquaintance" for some years, has proven to be much more than a writer of weekly stipend cheques and an occasional bull session. He (and his wife) have been along for this ride since I was diagnosed. Second YEAH!
So, I do have a support system of sorts, and for physical care when I get out of hospital, I have the inmates of the "Get Off Your Ass, Stop Making Excuses, and Make It Work" homeless shelter.............. Third YEAH!
To put in into the current vernacular - It's all Good. It will work out (assuming the surgery/prognosis works out) one way or another.
Mentally (emotionally?) I have decided to await the results of the surgery (not discounting the very real possibility that I may not survive the surgery) before I make any more choices. There is the chance that they can remove the growths. And there is a chance that they may have to removes some organs to remove the growths. And there is the chance that they can do nothing via surgery. If that is the case, they will take some "slices" to be studied by other oncology boards (as they did the last time) and they will all form an opinion of possible treatment (chemo, radiation, seeding, etc.). At that time I will decide between a dignified (natural) exit and becoming a whining, quivering, undignified burden on society............Not as simple as picking out new drapes, but not as difficult as it would appear either.
OOPS! My tamoral is kicking in............I'm feeling TOO GOOD for someone in pain, which means that while there is Better Living Through Chemistry, there is also confusion and muddled thoughts accompanying it, so I had best sign off and see if I can remember the way to the loo.................
Huge thanks to you all for your good wishes - and I will keep you informed!!!!
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Post by Mansons2005 on Jan 24, 2014 2:22:02 GMT
I can't even imagine myself in your position Mansons. I wish I had something helpful to say - but I don't. Oh my god - I'm embarrassing myself. I used to be less inarticulate. I'll try again later. Oh, but your "presence" and attempt to comfort and be compassionate is "good medicine" in and of itself! Please, don't be so hard on yourself. In my experience, there are no words to say in this sort of situation - but the mere act of giving "words" is a gift. And you have my heartfelt thanks for that (talk about embarrassing one's self!!).
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Fig
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Post by Fig on Jan 25, 2014 16:14:34 GMT
Ah, Fig - you have given me a soap box to orate from! When this pain became unbearable I realized that I had "run through" most of the emergency rooms and clinics in Chicago and owed them SO much money, that I was "forced" to go to Cook County (Stroger) hospital. Yep. the charity wards................. BUT! Not only was the care on a par or better than I have received in some of the most prestigious facilities, I am so AMAZED by the people! .... [clip] ... Huge thanks to you all for your good wishes - and I will keep you informed!!!! That is great to hear! They seem like caring people who do their jobs very well. I didn't realize that the staff at Stroger provide services of such a high caliber (calibre?). I believe that hospital has improved since I lived in the city... although never went there so maybe its reputation back then was in error. It's so important to feel confidence in the medical care one is getting. A relative recently had to go a specialist unfamiliar to him, and I heard through the grapevine that he was very impressed with how much the doctor showed concern about the well being of the patients. ... Glad to provide the soap box! Hoping to read more later, about whatever you want to discuss.
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Post by bookahtoo on Feb 13, 2014 0:17:11 GMT
Mansons -
I hope your surgery went well and you are being kindly taken care of. Post when you can.............
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Post by Mansons2005 on Jun 1, 2014 2:53:12 GMT
Gonna gloss over the terrors and pains of the past few months and jump straight into a GOOD thing old-age has done to me! During a recent telephone call with a researcher doing some work on the house we donated to a preservation organization, I recounted that the inspiration for the fireplace in one room was the one in the library at Sagamore Hill (because it is off center on the wall). In the course of the following conversation it was "discovered" that in my life I have been in social situations (many over-nighters)in over a dozen homes that are now "open to the public" while they were still private homes. I am in contract talks now for a series of interviews about my visits to those homes, particularly those in which I spent a rather larger amount of time. And the editor is considering referring me to other organizations that caretake some places that are not under the auspices of the Society that would probably use some "I Remember"s. Not much of a legacy, but one that will be appreciated by some.
Tid-bit - when they opened Sagamore Hill for the summer, they would play the Hat Game - Alice stood in the Hall at the junction to the short hall that led to the side porch and simultaneously the boys would open the front doors and the porch doors. The first blast of air would usually blow Alice's hat right of her head - a sure sign that it was going to be a "Good Summer"...............
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Post by Mansons2005 on Jun 1, 2014 3:11:01 GMT
Okay - a quick update on my "condition" - the surgery (which I have obviously survived) was both successful and a failure - one tumor removed, three (?!!) inoperable. After some biopsies and discussions, another surgery followed to determine if they could locate the "origin" of the malignancy. No luck on that front, so I am on a bi-weekly infusion of chemo-therapy. To put it in succinct terms, it SUCKS! I take five pills every four hours, including morphine (yeah!) just to counter act the pain and the effects of the chemo. And as I recently mentioned to someone else, the pills help with most of the side effects, but do nothing for the lethargy, brown patches all over my body, the mouth sores, and my hair (which is shedding like Gram's second best mink coat). But I am back to work, though THAT has changed - not the daily job, but most of my eBay contracts have canceled due to the new seller's standards - and I am in the process of wrapping up the remaining contracts and getting out of that business all together. More on that elsewhere................
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Post by Mansons2005 on Jun 14, 2014 1:26:49 GMT
Just read online about the death of an old friend in an airplane crash - he was one of the world's most caring people - devoted his life to the health and well being of humanity - he will be greatly missed. In a way I am glad that I can not go east for the services (providing that I am invited) - too many have passed on - aside from his family and professional associates, there will be very few of us left to morn him.
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Fig
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Post by Fig on Jun 18, 2014 0:27:44 GMT
Okay - a quick update on my "condition" - the surgery (which I have obviously survived) was both successful and a failure - one tumor removed, three (?!!) inoperable. After some biopsies and discussions, another surgery followed to determine if they could locate the "origin" of the malignancy. No luck on that front, so I am on a bi-weekly infusion of chemo-therapy. To put it in succinct terms, it SUCKS! I take five pills every four hours, including morphine (yeah!) just to counter act the pain and the effects of the chemo. And as I recently mentioned to someone else, the pills help with most of the side effects, but do nothing for the lethargy, brown patches all over my body, the mouth sores, and my hair (which is shedding like Gram's second best mink coat). But I am back to work, though THAT has changed - not the daily job, but most of my eBay contracts have canceled due to the new seller's standards - and I am in the process of wrapping up the remaining contracts and getting out of that business all together. More on that elsewhere................ Hi, I can't believe that I didn't notice that you started posting here again. When we hadn't heard from you in a while I used to check quite often for new posts. I guess because you showed up in some other places, somehow this one was neglected. How long will you be on the chemo regimen?
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Fig
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Post by Fig on Jun 18, 2014 0:28:28 GMT
Just read online about the death of an old friend in an airplane crash - he was one of the world's most caring people - devoted his life to the health and well being of humanity - he will be greatly missed. In a way I am glad that I can not go east for the services (providing that I am invited) - too many have passed on - aside from his family and professional associates, there will be very few of us left to morn him. I'm sorry to hear of the passing of your friend. He sounds like a wonderful person to know.
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Post by bookahtoo on Jun 18, 2014 1:07:12 GMT
I'm sorry about your friend Mansons. I'm really glad you feel good enough to post here again.
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Post by Mansons2005 on Aug 30, 2014 11:24:35 GMT
I am surprised at the way I feel about a recent action I took................. I finally determined that it was time to return my mother's DAR pins and awards as well as my father's/brother's and my SAR badges and awards so they didn't fall into the open market upon my demise............... I never identified with that membership in particular, as a matter of fact I thought it slightly foolish in my younger years................now that it is all gone I do feel a bit of a loss. I guess it is that voluntary relinquishing of being a "member" of "something". Now aside from a single membership in a club I can't use any longer because of distance, I am "standing alone" ................an interesting set of emotions. Who knew that a pound and a half of brass, gold and enamel would affect me in any way.................
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Fig
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Post by Fig on Aug 31, 2014 16:44:14 GMT
Sounds like there was a sentimental value that you didn't realize existed? I don't think we ever stop learning things about ourselves. I don't, anyway. And it was a part of your past and your family. You were in possession of all of them for a while, too. Sounds like you did the right thing with them.
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Pat
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Post by Pat on Sept 1, 2014 1:52:44 GMT
Mansons, I've gone through such a range of feelings reading your posts that I'm not sure how to adequately express them.
I feel badly for what you're having to endure, and admire your courage and perseverance. Your writings are inspirational and have touched me. I'm sure I'm not alone, and will not be alone, in that.
I think I understand your mixed feelings about donating your legacies from the past. I'm at an age where I'm starting to think about what to do with my "stuff," and have very mixed feelings myself. I have no children, nor any nieces or nephews who would be interested in what we have.
Some of my things are just physical objects that I could part with easily by selling or donating, but some are so filled with memories or my family's history that it hurts a bit to think that they're not going to mean much to anyone else. Just yesterday I was doing some reorganizing, and was once again looking at scrapbooks my father put together when he was young, mostly with poems, articles, or columns of his that were published, and patterned fabric that my mother designed, along with magazine photos showing models wearing clothing made with that fabric. No one is likely to want these things and, sadly, some day they'll end up in the trash.
Fig, I learn new things about myself all the time, too. And with aging, I find there are always new shifts in the body, or perspective, or desires to pay attention to as well.
Pat (LP)
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Fig
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Post by Fig on Sept 1, 2014 12:54:49 GMT
Hi, Pat -- It's good to see you here... I like your avatar!
I am going to change the name that shows on this site... just to not make it exactly like the other sites.
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Pat
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Post by Pat on Sept 1, 2014 14:47:57 GMT
Thanks, Fig! It's good to see you here, too. The avatar is from a postcard depicting a self-portrait painted by Louise Élisabeth Vigée Le Brun (1755-1842, France).
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Pat
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Post by Pat on Sept 2, 2014 16:10:46 GMT
I love this... Courage does not always roar Sometimes it's the quiet voice at the end of the day, saying "I will try again tomorrow" (anonymous)
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Post by Mansons2005 on Oct 4, 2014 11:23:39 GMT
Okay, so here is the bottom line on my health…………………..
I have cancer. Incurable cancer.
The CT scan after the 6th chemo treatment showed minor shrinkage in the tumors, the CT scan after the 13th chemo treatment showed no further shrinkage. The tumors are inoperable due to their location on major organs/arteries. I can not undergo any more chemo treatments at this time. Radiation is not an option with this type of cancer.
I will get a new CT-PET scan in 6 months to determine if the tumors are still malignant and/or if they have enlarged. This type of cancer (resulting from a teratoma) has probably been growing for 20 years – and it may now lay dormant, it may take another 20 years to become fatal, or it may speed up and become fatal within a relatively short time. Fortunately the organs (principally my remaining kidney) that the tumors are attached to are still fully functional and not yet affected by the growths.
In the mean time I live on morphine 4 times a day to minimize the pain. I can not take enough morphine to completely deaden the pain as then I can not function effectively. In addition, I also now take twice daily injections of a blood thinner to control small blood clots which keep forming in my lungs. Which complicates my hemophilia…………………
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Pat
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Post by Pat on Oct 4, 2014 19:00:15 GMT
Oh, shoot, Mansons. I'm so sorry the news wasn't better.
Pat
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Fig
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Post by Fig on Oct 5, 2014 16:08:38 GMT
This forum sometimes emails me with updates on threads in which I've participated. Not in this case... But intuition kicked in and I had a feeling I should check here.
I hope to be consoling, supportive, or whatever would be best for you. The unknown aspect of the timing of how this will occur must be especially hard to deal with. It must be hard to know whether to say good-bye to people and things. Hard to know how much to plan for the future. Of course, they say that being positive and fighting back are the best things when dealing with cancer. I hope you can do that still... I know that you have been, based on what you've said earlier. I've never been in this situation, and all I can think of is to keep fighting. We'll be with you, in spirit at least.
Just to say, I also am very sorry to read the update. Some physical concerns I have are just fading into the background just now.
Fig
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Post by Mansons2005 on Nov 28, 2014 0:26:12 GMT
My dearest friends and loved ones, I know that in addition to many other things, I owe you at LEAST an acknowledgement of your recent calls, messages and cards. Please forgive me for not responding. I have been in a combination depression and deep thought process – depressed that I have some life decisions to make and in a somber cloud while I go through the process of making those decisions. I just need some time without distractions other than those that this illness has imposed on me. Also, please be assured that while my current state of mind is dark and confused, there is none of the drama of “I think I’ll end it all”…………….while that is an option, after careful consideration I have discarded that as much too easy. Please know I am truly thankful for your love and support – in all the forms it has taken. It has been of more help that you may realize. I hope that you all have enjoyable and happy holidays, and remember that I love you all! Begging your forgiveness and understanding, George
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Fig
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Post by Fig on Nov 28, 2014 13:00:10 GMT
It's very good to hear from you!
I'm glad that you are not taking the easy way out. We want you to be here as long as you possibly can. Please post when you can. I haven't been emailing you lately, but have been thinking of you and sending some soothing thoughts.
J.
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Post by Mansons2005 on Dec 22, 2014 23:58:32 GMT
Joey Cocker is gone .................. it begs the question, what is left? ?? Keep singing, Joe, we still need you..............
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Fig
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Post by Fig on Dec 23, 2014 15:54:17 GMT
I was sorry to hear that. Did you know him?
I hope things go well for you over the holidays, too!
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Post by messilane on Jan 10, 2015 17:56:57 GMT
Mansons, I am hoping that this finds you still lurking and reading. I think about you often, and miss you so much.
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Post by Mansons2005 on Jan 11, 2015 13:20:15 GMT
Mansons, I am hoping that this finds you still lurking and reading. I think about you often, and miss you so much. Messi - thank you for the thoughts! I don't really "lurk" as it were ........... I have found a new and guilty pleasure....................I still "teach computers" as well as reading comprehension to some homeless guys (to give them skills to help them adapt to any sort of future) and one of the processes I have discovered is to instruct (not show) them how to log into several web sites and then read the contents aloud (to me). NOW - the guilty pleasure..............I have them read current posts from the Antiquers board. What nasty, mean pleasure do I get from this, you ask? They read and try to pronounce users IDs.............there must be a mean streak in my somewhere because sometimes listening to them struggle (very seriously) with komokwa, silverthwait, 4ls, adriaspiess, Amir Shmerling, and Chocashopaholic gives me a bit of a giggle................. now I will post some "better" news in the following post................
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Post by Mansons2005 on Jan 11, 2015 13:24:34 GMT
Meet with my oncologist Friday and here is the latest:
The cancer is still stage 4, but it is stable, which means that it has not progressed since the chemotherapy, if anything the tumors have continued shrinking by as much as 1mm each, but are still causing pain. Additional surgery is still NOT a possibility and more chemotherapy is NOT advised at this time. Bottom line - live with it.
The tumor near the vena cava is restricting the flow of blood from my legs back to heart/lungs and that is the cause of the "swollen" legs and feet - a condition that is not overtly dangerous (with monitoring and care) but is painful. Bottom line - live with it.
I meet with a soft tissue melanoma specialist on Tuesday 13 January to determine if anything can be done about the abdominal hernia (which is HUGE). The oncologist and surgeon think that surgery is too dangerous and NOT called for, the specialist will decide. If no surgery, the bottom line is - live with it.
I have some tests and procedures scheduled for 03 February to determine what damage has been done to the lungs by the rash of blood clots (most now dissolved by the blood thinners, but not all). The basic determination is that I have COPD which is treatable with medications, so the bottom line is - live with it.
SO!!!! The bottom line seems to be LIVE WITH IT. With pain and the need for constant medication (8 different pills and 2 different injections, some 2 to 4 times a day), yeah, BUT........................the key word is LIVE. There is no CURRENT reason to believe that anything is eminently fatal. So now I can do my laundry knowing that I will not be wasting my time and that I will get to wear all of the clean underwear..........................................
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Fig
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Post by Fig on Jan 11, 2015 14:56:27 GMT
Got an email notice of Messilane's post and came here, just to see that you had replied, Mansons -- Bonus! I've been thinking of you, too. I smiled at your "guilty pleasure" description. We all have to get those where we can! And "live with it" -- the operative word is Live, and that seems positive. It's good to see you. Speaking of seeing, I will be in Chicago for the American Library Association conference during the weekend at the end of January/beginning of February. If there is any chance we could get together, let me know. I'll be staying at the Sheraton, down by the Chicago River. But am definitely willing to travel to where you are. (And it's o.k. if you say "no, thanks" -- I understand that also.) Fig
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Fig
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Post by Fig on Jan 11, 2015 14:58:36 GMT
By the way, I love the way this site still calls me a New member, when I joined at least a year and a half ago! I guess I'm not posting often enough.
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