I am not in the position that most of you are, so many of you will say that I have no right commenting or can't possibly understand. I do, however, want to relate to you a long conversation that Belle and I had in November of last year. If you remember, Belle was having a really difficult time with the immunotherapy trial that she was on. The side effects were rough and she wasn't even able to take the drug as often as was recommended. I was quite well aware of Belle's feelings.....she had to do whatever for the sake of her kids and, as a mother, on some level, I understood that attitude. However, on that day, Belle was crying....she was really frustrated by how she was feeling, she couldn't take the dose that they wanted, she wasn't rebounding between infusions, there weren't many, if any good days, etc. So, I asked her what may sound like a 'mean' question. I asked her if she felt that by putting herself through this trial, she was really doing her children any favors? You must understand that Belle really couldn't any participate in her kid's activities. Yes, she was physically 'there' for her kids but was she really 'THERE' for them? I wasn't trying to sway her either way, but rather I just wanted her to think about all the different aspects of her choice and decide for herself what was really the best for EVERYONE, including herself. That was one thing that Belle had a difficult time doing....putting herself and her feelings into the equation. I got to tell you that conversation was really difficult and there were tears all around. A little less than a year before, we had had a similar discussion (see Belle's blog entitled 'was it worth it') but at that time, Belle was still able to be the MOM that she wanted to be. As Belle later recounted to me on numerous occasions, that day on the phone 'allowed' her to think about the possibility of stopping treatment and picking quality over quantity of life.... I gave her permission to at least think about herself. I have to be honest with you, after her decision was made every time Belle brought it up and 'thanked' me for giving her the courage to think about stopping treatment, it made me feel uncomfortable. I didn't want people, particularly members to know about that discussion because I know that there will be some who think it was the wrong thing to talk to her about. However, as a friend, what are you supposed to do when you see someone you care about suffering? How are you supposed to approach it when a person you love is crying, falling asleep in the middle of a conversation, is emotionally fragile and is physically spent? How does one 'encourage' that loved one to continue living a life that is so full of pain and suffering? Were her kids better off having their mom suffer and was it in their best interest to have them see her suffer? I recounted to Belle a story of a young girl who was in Erik's class. This young child was only 3 when her mom was diagnosed with breast cancer. Initial treatment seemed to work but soon the aggressive cancer was back and the mom pulled out all the stops to prolong her life. Lauren grew up knowing a mom who was always sick, always in bed, with no hair, who couldn't come to her school events, etc. Just after the kids 'graduated' from 6th grade, Lauren's mom passed away....but as Lauren will tell you, she doesn't have any nice memories of her mom. Lauren actually never 'knew' her mom.....not in the sense that her mom had hoped. I related this story to Belle to tell her that, although she had been, up to this point, the mom that she wanted to be, was continuing with treatment that involved pain, real physical symptoms like vomiting, extreme fatigue and pain allowing her to be the mom that she wanted to be and especially when all the tests had showed that the trial drug wasn't working?
I watched a friend recently pass away (a few weeks before Belle) and listened to her frantically state that she couldn't die yet....there was still too much to do and too many things to say....even though physically there was no way she could do anything. This same friend had closed her eyes to the fact that her condition was so dire and put her head in the sand....she kept trying different drugs, etc. in order to do anything and everything to prolong her life. When the last 4 weeks came and one doctor after another (yep, she still got 2nd and 3rd opinions..even then) told her that there was nothing else that they could do for her, she fought death and her whole family was shocked when the end came because she had always put on such a positive spin on her condition. Her family wasn't prepared and kept whispering to her to 'just eat' to get stronger to continue to fight. I feel for her family, because they are left behind, with questions still unanswered, with things still left unsaid.....all because Mariye chose quantity over quality of life. In her mind, she was doing this for everyone else and not for herself (even though her kids were all grown and quite capable of taking care of themselves). Her death was not serene...rather it was cruel, all because she kept fighting to live....her will was strong and her family ultimately had to watch her suffer on a daily basis until her body gave out.
IMO, each person has to decide for themselves what they want to do and be comfortable with that decision. I remember a few years back we had a member whose loved one was obviously dying and yet this member couldn't accept it. She said that a person should always try to everything possibly, including trials, even if that treatment meant it only extended a life by three weeks. I was aghast....because, IMO, what is the point? I know that when Belle made the decision to quit treatment, it was done with the belief that she would be able to live a relatively normal life again....no matter how long that time frame might be. No one had any idea that Belle's time on this earth would be so short, but for her, even though she was still very tired and couldn't drive any longer, she was able to spend 'quality' time with her kids and talk to them about some things that she wanted them to know. IMO, Belle was at peace and not so agitated and frustrated in her last weeks on this earth when she was still cognizant of what was going on. Regardless of the disease or condition, it will always be a difficult decision for any of us to make for ourselves or to help a family member/loved one have to make....I only hope that when that time comes for me or for my family member, I can make a decision that is best for EVERYONE, including myself.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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