Tuesday, July 11, 2006

7.11.06, It Could Be Worse. . .

Good morning. As most of you know today is IV chemo day. Not really like the joyess and stress-free capitalist celebration we call X-mas, nor like a birthday, but I wanted to write a few words of reminder about what it's like to allay some fears that I read, feel, and hear out there. Two of the comments for today — poasted to yesterday's short post on the blog — express this concern in a nutshell and then in a larger nutshell, a mellon rind-shell, or some much more appropriate metaphor, according to the proclivities of each author. Last week, too, a friend of mine went to the IV chemo session for me for the first time, and I hope no one will mind me saying so but the change this visit brought about has been rather stark.

There are two (I think?) long posts about what it's like for me to go into the hospital for the infusions once a week, and then of course the pill-taking chemo on all the rest of the days is mundane. Boring and unnoticeable unless you know what I'm doing, as harmless looking as taking multivitamins after breakfast or dinner. Sure, the symbolic import of taking the pills was unsettling for me the very first time I threw these peach colored, oval pills into my mouth. That's a minor thing though. If you go back and find those early posts on infusion, every detail is drawn out and the whole story is there, I can't remember the dates off hand; the whole thing is retold so as to settle fears, to say "Hey, this is not that bad," because I knew what I had imagined before seeing or experiencing this and I didn't want anyone's imagination to run away with them by not knowing what's happening.

Today, then, I wanted to post a little reminder: yeah, the drugs are toxic and there are side effects, but the whole process is like a long IV, just like you see at any hospital, just like many of you have had before. I get pricked with a needle, once, sort of, but even that is probably less serious than when any of you get a blood test because I have the fancy port-o-cath implanted in my upper right chest, making it childlike simple to get drugs into my aorta. It means they can't miss when they stick me, no vein finding, prick, done. Easy. I go, I lie down in a bed, I have a little private room (which I should for the cost!), they take my blood, then I wait for about 40 minutes. They go off to check that I'm still "otherwise healthy" enough to get the chemo drugs. After that, I keep lying there, and get an IV for 4 hours. Like I said before there is no pain during this process. Too, it's got to be understood for what it is. It must be accepted, known to be real, understood to have what power it does; otherwise we enter into the kind of denial that paralyzes rather than makes productive again.

Another question that came up: how long will you do this? What if the side effects are too serious, would you want to stop? Well, I do plan on asking the doctor again just to make sure the situation hasn't changed, but chemotherapy for me, for someone "in this stage (of cancer)" is palliative, it's for reducing other symptoms, it's for giving me more time. I stop chemo and poof. Who knows exactly how long till "poof" but that's what happens. You quit chemo and the cancer gets to have its way with you. So the answer to how long is, for what the term is worth, forever. "Forever" as that terms signifies for me; my own forever. The only other option is my mother's, that would be a miracle. There aren't any other options, none recorded and known about anyway.

My apologies for posting something so mundane, it just seemed necessary. I know the commentors can say "I know the infusion itself isn't so bad, it's the cancer I hate." Yeah, that's a valid point; but so is what I've written here. The chemo is all I have to keep me going, it is quite literally the Anti-Cancer. Just like they call chemotherapy drugs "anti-cancer" drugs. We're supposed to like chemo. Your grief and anger and other myriad forms of pain are not being touched here; they're all necessary and can be healthy feelings, I know this. They are different than mine, as we all grieve differently as one friend pointed out recently, and I respect yours. *Let me try and restate what she said to me, that basically that all of us in our individual complexity will grieve in and out of different stages, will feel depression or anger or sadness or loss of outporing love, whatever, at different times — the point is that when I look into your eyes, all I can truthfully is "I know you're in pain, I know it must hurt, but I can't really know what that pain is like." It's about a strong word-feeling: humility. As described to me. (Are you embarrassed yet?)* Me, I feel stuck, ill able to express my point here. . . I do thank you for all the concern and the support just before the infusions. Simultaneously, I don't want us to get out the black crepe, rent the hall, and tie gardenias to the hearse.

. . . I'll be honest, I'm reaching here, not sure from where nor to where. I feel a need to say something helpful, or comforting, or informative when I read those comments, like yesterday's, and when I see friends who no longer know how to act. I reach for the "How to Die of Cancer" handbook only to find and remember, "Right, there isn't one." For now, read generously, know that I'd like to help, and that often times all I can do is just stagger my fingers across the keys — which too can be a problem since neuropathy in the fingers is also a chemo side effect.


madame x said...

Hello fellow travelers.

Again, I feel the need to step up. I have the good fortune to accompany mr. j to the chemo infusion most weeks. I've missed a few here and there, but we always try to catch up on the highlights afterwords, a practice somewhat akin to reciting the plot of a really poorly scripted movie where nothing much actually happens. I'm absent today due to a teaching conflict, but otherwise I like to be there, trailing behind him with my enormous tortoise shell backpack and cup of coffee, ready to set up shop and ignore him for about 4-5 hours, then pack up and trail behind him again, back to the elevators, out to the car, and then along the winding streets to the homes from whence we came. When someone else comes along, it's like a mother duck and her 2 little ducklings waddling along behind. if everyone came to town, we'd make quite a parade.

Which is to say that mr. j speaks truth here. chemo is chemo. the pill days remain invisible to most of us, the IV days create a tableau vivante but otherwise the same basic thing is happening: mr j is doing what is necessary to minimize the impact of the cancer. he does it very well, which can indeed make it confusing for the rest of us, ducklings present or merely there in spirit, since doing it very well doesn't seem to mean doing away with it: the chemo does not fix the cancer, it just manages it. this is confusing. is mr. j in dire extremity and just putting on a brave face? or is mr j mostly fine and it's all secretly going to turn out okay? Neither. a little bit of both. mr. j is brave, but it's not a mask, and although the overall situation is indeed "dire," mr. j is in some ways "mostly fine," talkative, introspective, funny, interesting, capable of great depth, direct, emotionally honest.

What shocks most people about chemo is that mr. j has cancer. somehow this remains hard to understand. I wonder if it is ever possible to understand a situation like this. but take mr. j at his words here -- it's sometimes better, sometimes worse; some days there's poetry, some days just numerics. but we have so much to read yet. And I for one look forward to reading the blog for some time to come.

mme x

tossing salads said...

madame x i love you. thank you. it is not enough, but it is all i have at present. he is brave he is kind, he is still in the now. as i work with people just like him it never ceases to amaze me how they just want to be "normal" go about their daily lives, do what they love, be with those they enjoy. who engage them. i know you are one of them. i had the utmost pleasure of meeting you way back when and i still appreciate your thoughtfullness when i was trying to come to terms with myself. you really helped me with that. i love mr. j with all my heart. he has so enriched so many and without fanfair just doing what he feels is good and just and kind. he is a good boy. thats the mom in me speaking. ;) i am so grateful that he knows people like you who have been in his life. and for you to be there i know that its because of who he is also. im not a writer like so many on this blog, im just me, his sister, who wants a miracle, dont know if ill get one, i can only hope. but if anyone deserves it, its mr. j. spotricia, thank you. i would have loved to know more about what dan thought, and felt and knew, before his death, i didnt get that. but .... being a part of this process has helped me come to terms with 'it'. im humbled to know there are people like you, who teach, who enlighten and arent full of themselves. who give for the betterment of others, not expecting anything in return. fuck this shit!!!! i love you brother and wish there was more i could do. i only know that because of you i dont judge, i acknowledge that there are all types that make the world go round and what a boring place it would be without divirsity, questions, ideas. be strong and know that there is so much love for you, wishing, hoping, wanting. im here. for whatever. love forever and always.

Slarry said...

Wed. July 12, 2006

I, too, feel it necessary to step up and voice some of my concerns.
Mr. J is someone very important to me, also. He is beloved by many, for a myriad of different reason, depending on how we all came to know him.
He has strengths and weaknesses, as we all do, with or without cancer.
Which is to say, he is human.

And yes, it is true, Mr. Jones, you are fighting the good fight, you are resilient in some circumstances, when others might give up, give in. In that way, especially, you are remarkable.

I also believe, that every member of your family, everyone of your friends, everyone and anyone who has the good fortunate of knowing you, or getting to know you through the blog, all of these people---- are just doing the best that they can, in coping and dealing with the fact that you have cancer and a terminal one at that.

And no, no one knows how long you will live, if a miracle will take place, if the chemo will do all that you were told it was capable of doing. We can only hope and faith that it will.
That you will be able to continue to write, run and socialize as you fight and rage against this disease. This shitty cancer.

I, too, have gone with Mr. Jones to one of his IV chemo infusion days, I have also been present when he takes it oral chemo pills. Each time, it was heart breaking. Each time it was sad. Invisible or not--- the side effects are not. And maybe that is what some of the people who care about you are reacting to.

Our reactions may not be what you need on the way of support-- but this is probably a first for many. Just as being diagnosed and having cancer is a first for you.
I guess what I am trying to say, is that I believe that everyone is doing the best that they can in coping with your having cancer and undergoing chemotherapy.
There is no rule book to guide any of us through this.

But what I do see, is an overwhelming amount of love and concern, respect, reverence being offered to you, unconditionally. So, as horrible as your diagnosis is,
it is this out pouring of love from others, their ability to want to stand up and fight the good fight right along beside you. To be present., to be consistent, and yes, to be concerned and worried. Our timing may be off, our words might fail us as we struggle to find what you may or may not need from us. But the reaching out, the love and concern being offered, is universal, unconditional and overwhelming.

I love you my brother-- I will continue to be present, to listen and attempt to support you in whatever way you deem most helpful. At times, I may not be able to hide or mask my fear and grief. I will keep trying. I love you with all of my heart and wish you all good things-- happy franky scale numbers, less pain and good motility. I wish I could do more.
I am also so very grateful for the friends you have that support you, take you to your appointments, have opened their home and hearts to me as well.

In this way-- I feel you are very blessed.

Love and productive stoolage--