Emotional Narcissism, With a Few Facts Thrown in For Good Measure
I received an email today from someone who said "How is everything going with your family?...I read your blog from time to time, I haven't found any specific news in a while...", which made me feel rather guilty about the rather sporadic posting and also about the lack of the occasional purely factual update. Of course, the purely factual updates always feel like there's not all that m,uch to report, you know? With cancer, its just basically the perpetual balancing act between the disease killing you, the cure killing you, and the cure killing the disease, and sometimes the tightrope seems to be made of invisible fishing wire.
Maman had a much needed and gloriously long break from chemo, so that she would be able to visit her family in France. Both the chemo break and the visit were miraculous, and when I last took leave of her a week ago she was more herself than she had been since this whole ordeal began a mere (but exhausting) 5 or so months ago. We even went shopping a bit each day, which was really sort of the first "return to normalcy" type thing she'd done in 5 months. She was exhilarated, though still easily fatigued.
I was so thankful to have ma Petite Maman back, even though we both acknowledged that this was probably the last time we would ever have quite like this, with her strength quite this up. Realistically speaking, with the resumption of chemo and the cumulative affects of the poison, it probably was the last time I'd see her quite so "normal". It was so wonderful to get to have that time together, and we spent a huge amount of time together just the 2 of us (Wild Boar wandered off many a time in a wonderfully played and really quite subtle effort to give us this time), which I'm also so incredibly thankful for. It was the return of the ever-close mother/daughter duo that we had been for years now, but which somehow had been superceded by cancer's odious personality. Its nice to have this to hold on to, and nice to know for certain that the changes in her personality and in our relationship were due to the strains of chemo and cancer, and not exactly due to some horrible breakdown of our essential beings. I'm tearing up writing this, because I know just how important that last weekend was, and how much I now treasure the lucid moments, or the moments where she is simply my mother, and perhaps worries about something I may mention. These things that were taken for granted before and are now the gold standard in the currency of life.
I left for New York last Tuesday and Maman resumed chemo last Wednesday. The results of her last CT scan showed a decrease in the size of some of the tumors, but the chemo was attacking her bone marrow big time so they've had to massively scale down the intensity of the treatments...which means that they will not be able to fight her very aggressive squamous carcinoma as aggressively as they have been so there will be less of a decrease in tumor size, but there will be much more of an increase in quality of life. I think that's a fair deal, and that a lot should be said for quality of life.
I keep thinking back to the day in the hospital's basement radiology department, where they confirmed it was a brain tumor, and where, for the first time, we were given a realistic view of the big picture. This tiny cramped room, with the very sweet but incredibly awkward and socially inept Radiation Oncologist, who was hell bent on pointing blurry things out on the CT scan with faulty equipment and the shell shocked parents and little 'ol me trying to ask all of the important questions without having a clue as to what they were....I furiously wrote, and annoyed the hell out of him asking for even the spelling of certain things, hoping that by gathering and retaining all the information I possibly could that I would somehow be more armed for a battle that wasn't mine to fight anyway. The one thing I did not write down, but the things I can still hear so very clearly (although I might be the only one who actually heard it), is that the doctor said her chances of remission were so slim - that essentially, it would take a miracle.
I believe him...somewhere deep down, I don't really believe she'll go into remission. This makes me feel like a traitor of sorts - like I would never have saved the kingdom in Neverending Story, or saved Tinkerbell in Peter Pan. Worst of all, I'm afraid that my non-belief, which just may be realism, is somehow going to ultimately cause her death...in that same Tinkerbell Neverending Story kind of a way, you know? Its hard...its hard to find the necessary balance.
And evidently its hard to write a facts only post, which this was supposed to be.
I am so emotionally narcissistic, aren't I?
Maman had a much needed and gloriously long break from chemo, so that she would be able to visit her family in France. Both the chemo break and the visit were miraculous, and when I last took leave of her a week ago she was more herself than she had been since this whole ordeal began a mere (but exhausting) 5 or so months ago. We even went shopping a bit each day, which was really sort of the first "return to normalcy" type thing she'd done in 5 months. She was exhilarated, though still easily fatigued.
I was so thankful to have ma Petite Maman back, even though we both acknowledged that this was probably the last time we would ever have quite like this, with her strength quite this up. Realistically speaking, with the resumption of chemo and the cumulative affects of the poison, it probably was the last time I'd see her quite so "normal". It was so wonderful to get to have that time together, and we spent a huge amount of time together just the 2 of us (Wild Boar wandered off many a time in a wonderfully played and really quite subtle effort to give us this time), which I'm also so incredibly thankful for. It was the return of the ever-close mother/daughter duo that we had been for years now, but which somehow had been superceded by cancer's odious personality. Its nice to have this to hold on to, and nice to know for certain that the changes in her personality and in our relationship were due to the strains of chemo and cancer, and not exactly due to some horrible breakdown of our essential beings. I'm tearing up writing this, because I know just how important that last weekend was, and how much I now treasure the lucid moments, or the moments where she is simply my mother, and perhaps worries about something I may mention. These things that were taken for granted before and are now the gold standard in the currency of life.
I left for New York last Tuesday and Maman resumed chemo last Wednesday. The results of her last CT scan showed a decrease in the size of some of the tumors, but the chemo was attacking her bone marrow big time so they've had to massively scale down the intensity of the treatments...which means that they will not be able to fight her very aggressive squamous carcinoma as aggressively as they have been so there will be less of a decrease in tumor size, but there will be much more of an increase in quality of life. I think that's a fair deal, and that a lot should be said for quality of life.
I keep thinking back to the day in the hospital's basement radiology department, where they confirmed it was a brain tumor, and where, for the first time, we were given a realistic view of the big picture. This tiny cramped room, with the very sweet but incredibly awkward and socially inept Radiation Oncologist, who was hell bent on pointing blurry things out on the CT scan with faulty equipment and the shell shocked parents and little 'ol me trying to ask all of the important questions without having a clue as to what they were....I furiously wrote, and annoyed the hell out of him asking for even the spelling of certain things, hoping that by gathering and retaining all the information I possibly could that I would somehow be more armed for a battle that wasn't mine to fight anyway. The one thing I did not write down, but the things I can still hear so very clearly (although I might be the only one who actually heard it), is that the doctor said her chances of remission were so slim - that essentially, it would take a miracle.
I believe him...somewhere deep down, I don't really believe she'll go into remission. This makes me feel like a traitor of sorts - like I would never have saved the kingdom in Neverending Story, or saved Tinkerbell in Peter Pan. Worst of all, I'm afraid that my non-belief, which just may be realism, is somehow going to ultimately cause her death...in that same Tinkerbell Neverending Story kind of a way, you know? Its hard...its hard to find the necessary balance.
And evidently its hard to write a facts only post, which this was supposed to be.
I am so emotionally narcissistic, aren't I?
posted by Le Synge Bleu at 9:24 PM
6 Comments:
Doctors are always looking on the downside because they don't want to be caught with their pants down if something goes wrong. But I guess if they didn't look down, they woulnt' see that they have no pants on. Does this make sense?
actually the doctors usually only give noncommital answers, beause if they say you've only got X amount of time and you outlive the expectations then they lose their credibility and can be sued. So what I've found is that they dont usually look on thr downside, but rather they keep their eyes closed, fingers crossed and mouths generally shut.this doc was a rare occurrance.
I have found through my own experiences that you are damned if you do and damned if you don't on the whole "believing" front. I believed (and prayed, and wished, and pleaded) with all of my might for my Mom, and it still turned out the way it did. All I got for my effort was a bone-chilling slap in the face when she did die after all of my dilligent "belief" that she would get better. Cynical as it may sound (and this is coming from a girl who still believes in unicorns and Christmas magic, remember) I think that it is safer in situations like this to assume the worst and prepare yourself accordingly. Then, as the saying goes, you can never be disappointed, just pleasantly surprised.
Remember times like this weekend- no matter what happens. You are right to realize how precious they are and how fortunate you are to have them.
I agree with Chanteuse. When we got my mother's diagnosis, it was incredibly grim, as you know. Before they even told us how bad it was, I had already accepted the fact that she was going to die. I had no idea how fast it would all happen. That was probably the biggest shock of all. But accepting that part allowed me to spend the time I wanted with my mom, just enjoying her company (in between the bouts of tears and anxiety and anger and bitterness). I am so glad we had that time, that we had accepted her terrible fate and made the most of what remained. I have wonderful memories of my mother, even from those last few weeks. There are things I wish could have been different, obviously, but we have to work with what we're given. I, unlike Chanteuse, am not a dreamer though. I'm a realist. I knew the end was coming. I knew my life was changing in unimaginable ways. Nothing's been the same since. But I am glad that I didn't spend that time holding onto a dream or wishing for a miracle. It wouldn't have a changed a thing. But, that's me. We all have to handle life (and death) in the best way we know how. It's not the same for everyone. Cancer's a bitch. What else can I say? I'm here if you need me. Love you, sweetie. Sorry I missed your call. We'd love to see you over Thanksgiving. Let me know...
~B.
I wish there was something I could say to make it better. You been on a long road with lots of emotional times, and more to come. I'm glad that you have your boar to help you.
HUGS
bon soir, petit' chou chou, me and phyllis are sending you gros bisous, nous t'embrassons avec notre coeurs. Nous sommes bien organize pour t-jour. Nous t'aiderons autant que possible.
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