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Old 08-18-2004, 08:09 AM   #1
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lttlbgft HB User
Margaret's story.

Margaret originally had a cancer named Nasopharyngeal Carcinoma (cancer behind the nose). We found this out in January of 2003. Through out 2003, she battled it and finally won in the late part of the year (October, I think). She was scheduled for a three month check up in January of 2004 and was also informed about some spots on her lungs that had shown up. They didn't know if it was cancer or if it was scar tissue from a bout of phemonia she had during Chemo. She was exhausted from the Chemo and declined their attempts to persue the spots till her three month check up came due.

In January, at her three month check up, they dropped the bomb and informed her that the spots were indeed cancer. It was Small Cell and it had consumed her in the three month period. It was now terminal.

Margaret did quite well for several months and even gained back a small amount of weight that she had loss during Chemo and Radiation the year before. In February she was able to make a two day trip to Chattanooga and to North Georgia and Alabama, to see mountains and canyons. She even braved an 800ft deep canyon in North Georgia. There were allot of steps but she did as well as did, if not better.

Around May, she started to get sick again. She began losing her appetite and started to have time when she was to sick to get out of bed to much more than use the restroom. Most meals, that she did manage to eat, sent her to the restroom again. But, all in all, she remained strong, for the most part and in early June, she was able to make a return trip to her home town, 450 mile from here, for one week. All throughout May and some of June, Margaret was able to get up and get out, if the need was there or if she just wanted to get out of the house but she was typically sick to her stomach. A condition that she learned to live with as it was so frequently there. Till the middle of May, we made weekly trips to the Moose Lodge, where we played pool with friends. Margaret always had a beer or two, much to the dismay of her hospice nurses, who were concerned about the interaction with her pain meds. Also, during this time, she was put on Oxycoton and Oxydose for her pain. she started to have frequent pain in her lower left abdomen and her side and back changed color, to a spotted blueish color. The nurses told us that this could have been caused by her continual use of a heating pad but I do not recall there ever being a firm decision made about it. It didn't really matter as she was not about to give up her heating pad anyhow. Also, she began to choke on her drinks constantly. This lasted till the end.

When we got back from her home town, Margaret took very ill. She remained this way, for the most part, right up until the end. This would have been around the 11th or 12th of June. She did have a few good days where she felt OK and she was able to get out of bed and make coffee and even cook, if she took the urge. And if she took the urge, you were best off to leave her be.

In the beginning of July, we entered a new and disturbing phase. Margaret would confuse people (family members) names and even recent memories. For example, her friend was there and Margaret was telling her how her sister had done her nails for her because by now, her hands had a slight tremor to them. She was showing her nails, which were not even dry yet, to her friend when her daughter walked in the room. Her daughter stopped and looked at her, very confused by what Margaret was saying, she asked her "Mama, you don't remember me doing your nails?" and Margaret tried but could not. It became common place for events of this nature and we all decided to just go along with it. It also became common place for Margaret to call us by different names. All people's names who we new but frequently not our own. This kind of stuff would come and go throughout the July and in to August. Also, in the beginning of July, Margaret took quite ill and she was following down the same path as personal accounts that I had studied here on this board (mostly from Medphoto). We thought she would pass then and family flew in and everything, only for Margaret to rally and come back to us. She kept bulging her eyes out at us during this time. She told me that she couldn't see out of her right eye. She reported talking to people who had long since past on themselves. She also reported seeing a tree walking down the road. These hallucinations came and went till the end. We would play along and pretend that we saw them as well. We tried to never contradict her although sometimes someone would slip and then the rest of us would have to cover for them. During July and in to August, Margaret lost allot of weight. She barely ate anything at all and when she did take a bite or two, it almost never stayed down. She coughed a terrible, deep cough for which she was put on an inhaler. The cough reminded me of someone who had something go down the wrong pipe. It became common place to hear her cough and then we would jump up and grab her inhaler so to prevent her from having to reach for it. This cough was always followed by the need for a paper towel so that she could spit out the contents of her throat. I remember reading about folks who would cough up black matter but Margaret never did that. It was always a yellowish or green color. this cough remained till the very end.

The things I have described to you in the last paragraph continued in to August with very little change. Margaret was now down to about 90lbs. Her weight when this started was 165lbs. She looked very skinny but this was only to get worse. Her body at the time of her death was 79lbs.

On August 11th, her daughter called me when I got home from work and reported to me that Margaret couldn't speak. I went to her house where I remained until her death. She was able to get out very few words in the three days that followed. My belief is that she would get so angry, that she would force words out but it was usually only one word but every now and then she would get two or three words out. Enough to make a small sentence. Her breathing was very shallow throughout Wednesday night till Friday night. She was very uncomfortable. She kept changing positions in the bed and in fact, she was upside down in the bed when the end came. She was very fidgety and continued to try to get up out of bed just to wonder around the house. We put the rail up on her bed, finally, on Friday night after she took her daughter for a 20 minute trip to the rest room where her daughter reported later that Margaret would climb in and out of the shower and basically was getting in to everything in the restroom. Her daughter also reported that Margaret became abusive toward her and even pulled her hair, after Jessi suggested that she go back to bed. Her daughter did say that Margaret was out of it and didn't seem to know what she was doing. Sometime Friday night, her breathing changed to a pattern known as Chain strokes. This continued for hours. A very quick gasping is the best I can describe it. At 11:40am or so, her breathing changed to another pattern known as "Fish out of water" pattern. I told her children that we only had 20 or 30 minutes left (based on what I had read here) but she didn't last anywhere near that long. At 11:46am on Saturday, August 14th 2004, Margaret made her final attempt at breathing and then passed.

She fought hard but I think she was ready to go in the end but her body wouldn't give up. She was only 42y/o. If this account is of any help to anyone, then this is good. Please do not expect that your loved one will follow an identical course but be aware of the things you read here as it may help to explain the things you will experience later. Its nice to know if things they do or say is normal. I know. Good luck to all of you.

Richard.

 
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Old 08-18-2004, 08:12 AM   #2
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lttlbgft HB User
Re: Margaret's story.

Also, a huge thank you goes out to a board member named Medphoto. We followed you experiences the most and we grieved for you when you lost your father. Your personal accounts were very helpful even though we took a little different path than you and your father did.

Thanks Again.
Richard

 
Old 08-18-2004, 03:17 PM   #3
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janice0815 HB User
Re: Margaret's story.

Thank you so much for sharing Margaret's story with us. I have learned much from your journey and will pray for you all. You have taught me very much in a short time.
Condolences. janice0815
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Old 08-19-2004, 08:57 AM   #4
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RitaB HB User
Re: Margaret's story.

Thanks for sharing your story. It sounds (in my opinion) that the cancer had invaded her brain as well. My sister is in what I call end stage non-small cell lung cancer, and though you would be surprised at how strong she sounds, the doctors have stopped all treatments and called in hospice. It is in her brain now and growing rapidly and the main symptoms we mostly see now are slowling of motor skills (both fine and gross) and problems getting thoughts into words or changing conversation topics in middle of a paragraph. Also, it seems as if she is becoming more hostile toward anything in general and extremely outspoken.

It is sad. Her and her husband has a wonderful love story as they have been together for 31 years now and I know she hates to leave her 2 grandchildren but I worry that her own 2 children are not more attentive and intuned to what is going on.

Your post helped tremendously.

Rita

 
Old 08-19-2004, 05:12 PM   #5
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lttlbgft HB User
Re: Margaret's story.

Thank you Janice. I hope it helps, if even just a little.

Rita, Do not be concerned about her children. Margaret's youngest and second children were the same way. I think we all experience a certain amount of disbelief about what is to come. Even I did. This is my second go around with a love one dying of cancer (my mother in 96/Liver cancer) and I've learned now that there is really no such thing as being prepared for the final moment. After all of the studying I did, I was no more prepared for the final moment than they were. I broke down and felt as if I had let her down. I would urge them to "say the things that are important". I wouldn't use the words "say what you need to say".

 
Old 08-20-2004, 08:00 AM   #6
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Sbeth1966 HB User
Re: Margaret's story.

Richard...I have been reading your posts, I actually read the posts everyday...hoping for encouraging words and stories and heartsick to read the dispair in many. I just wanted to offer my condolences to you on your loss(es) and tell you that I admire you for your strength, sensitivity and wisdom in your posts. I'm sure that Margaret knew how very lucky she was to have loved and been loved by you. Best regards to you as you begin to heal from this painful journey.
Beth

 
Old 08-20-2004, 07:01 PM   #7
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lttlbgft HB User
Re: Margaret's story.

Thank you SBeth! I realize that not all people here are "terminal", as Margaret was. I hope they don't let my post get them down. It isn't my intention, to be sure. But for those of you who have gotten "the word" from the doctors, these post are for you. Keep your head up and try to do the things you want to before you get to sick. Margaret did and I believe the memories of those events are as important to me now as the events, themselves, were to her. For the care givers, God bless you. Take one day at a time, you can only do what you can. Leave someone else in charge for awhile sometimes, and get out to take a break. Leave a phone number though (I always got confused about Margaret's medication when I would relieve Margaret's daughter and then I would have to call her to be sure).

This is still a very hard time for me. I miss her more than I could have foreseen. I am a believer in evolution, yet I catch myself talking to Margaret constantly. I hope she is there, I hope she can hear me.

Anyhow, thanks y'all, for your time. I think I will leave this board now. I don't think I can be of any further need and I fear that I may discourage someone. Good luck to all of you.

Richard

 
Old 08-24-2004, 05:35 PM   #8
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mephoto HB User
Re: Margaret's story.

Quote:
Originally Posted by lttlbgft
Also, a huge thank you goes out to a board member named Medphoto. We followed you experiences the most and we grieved for you when you lost your father. Your personal accounts were very helpful even though we took a little different path than you and your father did.

Thanks Again.
Richard
Richard,
I've been still reading the boards since the loss of my father. I appreciate your thanks and I am glad to know that my story has helped your family through this difficult process. I am so very sorry for your loss...it is so difficult to go through, I know. You think someday it will get easier, but I find that not to be true just yet. The first year seems so long, and so hard. Honestly, I don't know how my mom does it. Thank you again for your thanks and you and your family will be in my thoughts and prayers during this difficult time. This is a very special group of people on this board, I look forward to logging in everyday and following their stories and praying for them and their families.
medphoto

 
Old 08-24-2004, 07:04 PM   #9
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lttlbgft HB User
Re: Margaret's story.

Medphoto.
How nice it is to see that you found my post. I can't remember if we ever actually talked but I feel as though you are an old friend. We copy/pasted all of your post and few post from some others people as well. Yes, they were helpful, very helpful. I'm sorry about your father and I clearly remember your description of his final hours. Margaret followed an almost identical path in her final hours. We studied your comments on more than one occasion and even though there were differences leading up to those final hours, many of your comments described what we were witnessing. It was very comforting to have your comments as a resource, so as to compare what Margaret was going through to what your father had gone through. It helped to lessen our anxiety. Plus, we were prepared for much of what we saw and therefore were capable of taking what action we could immediately, to try and comfort her because we had studied your accounts and a few accounts of some others.

Thanks for your reply Medphoto. Margaret's children will be very excited to know that I have heard from you. Hold your head up as I am trying to do. It has only been ten days for me but I started back to work today. It wasn't much help but I'm hoping with a little time it will become easier.

Just a note. I would have thought I would have been more prepared for her passing because I knew it was coming for 7 months but I was wrong. It's tough to lose a loved one. Good luck and my condolences to you and yours.

Richard.

 
Old 08-27-2004, 10:51 AM   #10
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deboraStewart HB User
Re: Margaret's story.

Hi Richard and sorry to hear of your loss. I'm not a cancer patient nor do I have a family member going through this. But my maid's sister in law who also had lung cancer and died a couple of weeks ago has made me think of how vulnerable we can be, here one day and on the next, well... I just wanted to say that I really do hope you and Margaret's daughters can overcome such a tragic thing and that Margaret herself has finally found the peace she deserves after all she went through. I've had 3 heart surgeries and will be having a fourth one in the future. Anyway, I only wanted to to say how sad I am for all that happened to you. Take care,

Débora from Brazil

 
Old 10-06-2004, 08:02 AM   #11
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lttlbgft HB User
Re: Margaret's story.

Well, it has been almost two months since Margaret passed. Sometimes, it still seems as though it is unreal. I still stare at the phone and think to myself that I should be able to call her number and talk to her. I miss her greatly but sometimes I find myself angry with her for things that are happening now. Situations that I feel that she may have known about. It's very distressing to me when this happens but I can't stop it, so it goes on. Still, I miss her presence, I miss her calling my lazy self and insisting that I get up and come visit, I miss the trips we took and the plans we talked about. I'm a truck driver and our children (her daughter and my daughter) are nearly grown. She told me once that she wanted to get her CDL and we could buy a big fancy truck and trip back forth, coast to coast, together. Lost dreams, that's all they are now. Nothing left but memories of her giving me one of those cute little smiles or a surprise hug as I walked by. She sat beside me the day before she passed and posed for a couple of photos with me. I was the only one who received this privilege. I must have been pretty special to her. I hope I lived up to her expectations, although I'm not sure that I did. Margaret elected for cremation, therefore I have no place to visit her except in my mind. Perhaps in my dreams but I'm not sure most mornings. Sometimes I wake up and believe that I dreamed about her but I can't quiet remember. I wish I had a definite place to go and visit with her. The house where her Urn is, is a far to busy a place to spend time. I wish there was more clarity, more certainty and more direction to my thoughts. I wish I could dream of her and remember the dream. A simple dream, one of us just walking, holding hands. We don't even have to talk, just spend time, even if it isn't real, it would do wonders for me. At this point, I can't even be sure if I am dealing her passing. Have I accepted her passing? I don't know. Sometimes I think I have and other times I feel as though it is looming over my shoulder, waiting for its opportunity to crush me. I don't know, I just don't know anymore. I have removed all of her photos from my home and computer, so as to distance myself from her, for now. Perhaps things will be more clear in another two months. I hope so. I will return then and let you know.

Richard

 
Old 10-06-2004, 05:31 PM   #12
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deboraStewart HB User
Re: Margaret's story.

Hello Richard, death is just like everything else in our lives, I mean, we have to allow ourselves time to adjust to new situations. I do believe that you will overcome all your mixed up emotions eventually, but don't force it on yourself, just let things happen naturally, after all, she was very important to you. Since you don't really have a place to go and visit her, if I got it right, why don't you create one? Wherever she is, she'll feel your presence so, you could for instance have a photo of her and some flowers in a jar in a little corner of your house where you could go and talk to her and say your prayers. Or perhaps, choose a church you both liked. If after a while your really feel that your life is being afftected by this whole issue and you're getting too depressed, don't hesitate to seek professional help. Doing therapy might help you a great deal. Remember, she had a very slow and painful death and that alone must have been terrible to handle. Keep coming here to vent any time you like and pray to God with all your heart asking him to help you through this such difficult time. Take care,
Débora

 
Old 10-09-2004, 07:52 PM   #13
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lttlbgft HB User
Re: Margaret's story.

Well Debora, thank you for your concern but I don't think I'm ready for a shrink just yet. Sure, I am down but a good part of time, I spend looking to the future and all that it may hold. Reluctant to go on with the future, sure. After all, I had my life planned with Margaret and I'm not ready yet to make new plans. I'm sure that I'll be OK with the passing of some time.

 
Old 10-10-2004, 06:33 AM   #14
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Re: Margaret's story.

Hi again. I'm happy to hear that you've been managing to hang in there without having to resort to therapy. I remember how bad I felt when I lost my dear step father who was one of the people I loved most, from ALS. I was living in Scotland at the time and when I learned of his terminal condition, I simply told my husband that I wanted to come back to Brazil to be with him. He died five months later and I don't think I've fully recovered yet, and that was back in 1988. I hardly ever go to the graveyard since it's quite far from my house, but I often talk to him, I mean, I do the talking, of course. It makes me feel better and believe it or not, there was even a time when I was having problems and I kind of asked him to help me. I said that I knew that if he were alive he would so, if there was a way at all that he could somehow help me, to please do it because I could no longer take it. Amazingly enough, the answer came on the next day and ever since I've come to believe that a loved one can actually be watching over you. Anyway, Each one of us has a way of handle things and I hope that you find your own very special way to deal with Margaret's passing. Take care and feel free to write to me any time you want to vent.
Débora

 
Old 10-11-2004, 01:39 PM   #15
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lttlbgft HB User
Re: Margaret's story.

Yes Debora, I understand and agree with much of what you have written here. I, oddly enough, am a believer in "Evolution" over "Creationism". This, of course, leaves me feeling a little awkward when I catch myself talking to Margaret, which I do constantly. I think I have said it here before but I will say it again. "I hope I'm wrong, I hope Margaret can hear me" and there is no such thing as "saying what you need to say to a loved one before they pass". Everyday I find new things to tell her, just as if she was here with me right now. I hope she is. She was such a good person and I would want her to know that her not being by my side has effected every aspect of my life.

 
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