Tuesday, May 8, 2012
Sunday, May 8, 2011
Tuesday, May 3, 2011
Thursday, April 14, 2011
I have been hanging on by the tips of my fingers. I don’t quite know how I got here, but I did. I have one insidious disease, and at no time has any doctor ever told us what to expect post-hospital. They’re just thrilled they can shove me out of there alive. (Day’s over. Let’s have a drink.)
Yes, I survived Hodgkin’s Disease like a trooper. A cancer with an unheard of ninety-eight percent survival rate. While technically I’m alive (I think, to join that two percent for real, I’d have to have truly dropped dead as opposed to faking it which I’ve been doing for the past four years. Yeah, yeah, yeah, I know. Dead people can’t count. Because they’re dead.) I believe I fell into the bin of two percent of patients instead of sailing through this mere trifle of a lymphoma.
I often forget I had cancer.
After four years I can tell you it could be worse, and it is, “my breath of sunshine” ENT becomes less and less cheery each time he sees me. He did give me a back-ended compliment yesterday though. He told me he had expected me to look much, much worse than I had when he first saw me many light years ago. Given how miserable last week’s CAT Scan is, I should look like a piece of shit.
To that, I’ll say to him and any others with similar expectations,” Au contraire.”
He took back his promise of permanent stents. These were to solve the hearing problem I’ve been suffering for months now. Instead, he put in another set of impermanent stents back in my ears knowing that they will fail, but may improve my hearing as we choose A HEARING AID. I have no more than the usual amount of hearing loss. Permanent stents require surgery. Surgery, infection. Infection, GAME OVER. Thanks for playing. Please follow lights at end of the theater where our ushers will tell which way you exit the building. (“For You, you take the BQE over the Kosciuszko Bridge…”)
So I ‘m also a member of the small group of people with complications that doctors’ usually find are a snap to fix. (I have four practitioners who come to my home to treat me in various and sundry ways. It doesn’t do anyone any good if I can’t hear them. It’s like there’s a scrim between me and the rest of the world.)
But that’s nothing. There’s The Skype of yesterday evening. Just me, Chip, and my psychopharmocologist. Nice and cozy.
Background: My drug-combo isn’t good. Not at all. I’m either tired or frightened. The sleepiness has to be my clever means of escape. Who needs therapists when I know myself so very well? Me, you toadstool.
I wanted to be crystal-clear to my psychopharmacologist about what was going on with me
Look, I’ve been doing this for four years. And it’s about all I can take. Nothing is pleasant. Nothing is fun. I feel sick every day. I’m petrified to exercise, because it makes my choke and gasp for air. I think I’ve had more than enough. And for me, death is my most appealing course. I want to die.
Was I clear enough?
He was really quite the gentleman and gave me props for four years of hell. He said he still wants to find a way to allow me to have some joy in my life. Lovely man. I was impressed. (I guess after all those years doing exactly this, he better be damned good. Otherwise, his office would be surrounded by piles of dead New Yorkers. Not a good look.)
My talk therapist who is one smart cookie. She said, “What you need are girlfriends.” (They could be boys too.) Yeah, like I used to have when I was I kid. When we shared everything and all. Okay, I don’t have that kind of staying power anymore. We’ll start with fifteen-minute visits and go from there. Whaddya think?
(Better than a visit to the theater.)
(Better than a visit to the theater.)
Tuesday, April 5, 2011
I wrote this post about a week ago.
Fear. I am paralyzed by it. I think I’m going mad. I don’t want to see anyone. I don’t want to speak to anyone. I want to be Bubble Girl who has access only with mother, brother(s?), and my honey. A Seinfeld episode included Bubble Boy. Bubble Boy was an asshole. A real a shitheel. I‘m working on my asshole and shitheel parts. I want to be just like Bubble Boy, I have what to be an asshole and a shitheel about. I don’t do very well with those parts. But I’m a whiz at paralysis, shame, fear and loathing,
When my P.T., the best P.T. in the whole entire world, watches me as I cough and cough and gasp for five minutes or so. (This was a good day. You should hear me cough between every single, fucking rep on a bad day.) I said to her, at least you’ve seen this. You get it.
But she hadn’t. She had never seen a good Fran “Time out, all! Just give me whatever the hell time it takes to get my breath back, could you please?” I know I do my damndest not to cough excessively if I can manage to do it. It’s like stuffing the snakes that pop out of the can back in. There’s probably some exercise value to making that work over and over again.
I know she knew how rotten I feel, but I think she saw for the first time the depths of my rotteness and can’t be far from home.
Because when I go into my daily gasping, people who don’t know, don’t get it, become frightened. “Are you okay? Do you need more oxygen?” And they always look more panicked than I. I had to explain how the remainder of alveoli work to my oncologist/internist, ENT. I received totally incorrect information from my original pulmonologist. There are very few people with such severe case of ARDS who survive. Lucky me. I should get a ribbon or maybe even a medal for this.
Because I have so many fewer working alveoli, I can’t get oxygen in my blood fast enough. You can bathe me in oxygen if you like. It doesn’t make a whit of difference. I can only metabolize what my ruined lungs can metabolize. Period. (So the crazy thing is that I have slight pulmonary high blood pressure.)
Regarding nothing yet not. I just listened to Robyn Hitchcock sing, “Because he wouldn’t make love to a loaf of bread unless of course it were in his bed.” My thoughts exactly.
My eyes are always wet. I’m not experiencing an allergy. I still have a toe touching the ground that allows me to tell the difference between sad and an allergy. You’d think I’d want company, wouldn’t you? I am impervious to most of what goes in the outside world. I wish I still cared about everybody else. Oh no, I wish you all happiness and good things. They just won’t ever happen to me. That’s pretty hard to take.
I don’t see my ever accepting my situation. It’s hell on earth as it is and can only get worse.
Hey, I’ve lost ten pounds. I don’t have ten pounds to lose. But I don’t want to eat. My eighty-seven year old mother has taken to making things I’ve always loved. (The best damned chicken soup with homemade noodles. Kosher for Passover even.) Smart cookie, that one. And a damned fine cook to boot. Ma, I salute you. She sure as hell didn’t want to see her baby go through this. I think someone told me that she said way early on in this mess, “I wanted so much more for you.” This from a woman who lost her husband and mother within months of each other. (For real.)
Ma’s had it with this shit. I wish that were enough. When we were kids, and she got really pissed at us for whatever the hell we’d done, she would stamp her foot. It was loud. It was scary. And we, stupid kids that they were, jumped back utterly petrified. I like to think, if Ma stamps her foot, the whole of it, ARDS scars and the Bronchiectasis (gesundheit) would tear ass in fear. While the Foot Stamp was guaranteed to make us quake with fear, we never pushed the envelope. (What else could it do?) I never wanted to tempt failure to have Ma use the Foot Stamp to rid me of ARDS and Bronchiectasis (geundheit), and it not work. (But it would be so cool if it did!) But we all know the truth. If the Foot Stamp were so powerful, my Dad would still be with us. There’s my answer.
Ma assured us that the foot stamp had no power in my pathetic situation. (To this day, if she stamped her foot, Doug and I would turn in to jelly.) Are we not pathetic?
Actually, I didn’t have anything to lose except my poor beautiful quadriceps that I worked so hard to get. My skinny legs disgust me. I suppose if I took every waking minute every day forever and ever and ever, maybe I’ll get something back working with puny ankle weights. Frankly, I don’t think forever and ever is quite enough time. Too damned bad, Lipman.
To be continued…
Thursday, March 24, 2011
I know I’ve said this too many times and in too many ways. But everyone needs a reminder now and then.
I am not brave in any way shape or form. I’m petrified. Fear has always been my motivation for everything I do. Without it, I’d be off somewhere lying on a beach chair drinking a piña colada. Fear gave me my “game face” when my whole world fell apart.
I used to live in Queens as a little girl. Right by Fresh Meadows in one of those really cute – they still are- starter houses with sidewalks, nice neighbors on porches to visit who would even welcome you with open arms, and a real honest-to-god life on The Block. It was beautiful. There was even a farm a few blocks away and we had a farm stand to pick produce. The farm closed several years ago. There was a plan afoot to use it in conjunction with our old school P. S. 26. I don’t know if it ever got off the ground. But that farm was the very last one in the city of New York.
Our family moved to Long island rather than Jamaica Estates, which was really close by and would have made every single one of us happier. Fall of ’68 was the New York City teacher’s strike and times were ugly. We didn’t honor the strike, and I remember climbing up the steps of elementary school, waving gaily to my picketing kindergarten teacher, “Hi, Mrs. Sammelson!” At least Mrs. Sammelson who never said much anyway, had the decency to look at me like a deer in the headlights.
Other teachers were hardly as pleasant, “Your parents don’t love you!” was one of the epithets I can recall. Now I didn’t see this, but a teacher, I’ve been told, lunged out to me. To do what, I can’t imagine. You try and hurt his little girl; you’re messing with the wrong man. A cop had to hold him back from ripping that woman apart. Well, they got me in and then they still had to go to the junior and senior high schools to do the same for my brothers. We all made it in and out alive and all in one piece.
Reluctantly, in lieu of the lovely Jamaica Estates, my parents decided the move would be to Long Island. And we did. To the edge of Port Washington with a Manhasset address. The basement leaked like crazy, both parents got horribly depressed and so did we three kids. (What choice did we have?) The family lore was,
“Thank goodness Franny so young. She escaped the horror that was Port Washington.”
Well I didn’t. How the hell could I unless I lived in a bubble away from my terribly unhappy family? I played it tough. I can handle it. (We all do what we have to do to get by.) I knew I wasn’t happy. But everyone around me said I was. You see, I learned at a very early age to doubt my instincts. By the way, I don’t do that anymore.
The schools were really nasty. Yes the vaunted Port Washington Union Free School District. Since we were “city” kids, we had to be ignorant and poorly educated. Doug and I were both placed in roughly the bottom of our respective classes completely ignoring the fact that our grades were sterling. For me Mom included an enormous list of books I’d read. No matter.
Doug was made to take a placement test which in the intolerable heat of an August day in the Carrie Palmer Weber Junior High School of The Port Washington Union Free Public School District. The thought balloon over his head must have something like, “Fuck you. I’m not taking your fucking test.” Whether I have the contents of the thought balloon right is irrelevant. Brave Dougie refused to take the test. And as a prize, he was placed in track two with a mess of thug-like people. Lucky for Doug, “He’s good with people.” He managed to become the “pet” of his fellow classmates as he worked himself out of the hole in which the school had placed him.
And the smartest one of us all, Eric, was kept on pins and needles for two years while the grand poobahs of Paul D. Schreiber High School of the Port Washington Union Free School District decided whether to accept his credits from his Queens high school. A week or two before graduation, he was told his old credits were just peachy.
I think it’s becoming clear why I feel as I do about Long Island in general and Port Washington, specifically. I never needed to figure out the rules of play while in Queens. I believe I was born with them. I was happy and friendly. And people responded back in kind. That was it. Simple and got the job done.
I had really big problems with Port Washington, and I think an awful lot of us had similar social issues. That’s why it’s so amazing to find such lovely people now who were there all the time.
So, fear has been a close friend of mine for a long, long time. Helped me be one of those “high achievers.” (Ugh.) And now, I go through my exercise and walking rigmarole, because, I’m more frightened about what will happen to me if I don’t do it. Except my newest hell is that I’m in a panic about doing any exercise at all. I’m so afraid of gasping for air and not getting it back. I can’t win.
Thank goodness, the psychopharmocologist recommended more Klonopin when I flip out. It’s something.
Monday, March 21, 2011
I’m so glad didn’t write to all of you last week. Trust me, this one is way cheerier than what you would have seen.
I had two episodes of not getting enough oxygen which put me into the gasping for air abyss and thinking that I can’t imagine an uglier more painful way to die. As soon as your body realizes it’s not getting enough air to breathe, the body and hence the human caught kicking and screaming within that body, are in automatic Panic Mode. Under W.’s color-coded terrorism warning system, this would be Code Red. Everything seems to be hooked just perfectly. What the fuck is going on?!?
The first was an oxygen line squished in a doorway. This scared the crap out of me. A mere crimp can send me into a paroxysm of hysteria. Then on Friday in the bathroom…(why do these things always take place in the bathroom? Because, you silly thing, we (the gods) are in a festive mood: let’s make the situation as miserable and as embarrassing as possible…isn't that fun?) I’m sitting and I cannot catch my breath. I cough. Over and over and over again. (The kind that used to break ribs until my Pecs of Persuasion developed sufficiently to allow the bit of lung that I’ve got to remain functioning. Now they just do evil things to my back muscles. I can handle those, piece of cake. Ha!) Chip hears the commotion and checks to see if the air is going through all the tubes on my tether. So what the fuck is going on???
He jiggles the bottle of water into which my oxygen passes before getting to me. Without this little step, I’ll dry like a raisin.
Suddenly, I’m getting air. Who, beyond Chip, will think of doing this? I need not only a babysitter, but a handy babysitter at all times. No joke. I’m off in Panic Land, so I’m entirely useless. I guess whoever’s here calls 911. What other option is there?
These frightening episodes exact a toll. There’s always some of “I don’t want to live anymore’s.” But it’s what happens to me every day that makes living such an unpleasant thing to do. I’m petrified of walking and exercising—the two things I must do if there ever is treatment for this terrible disease. For it is terrible. Being a shut-in is terrible.
My fears are sometimes insurmountable. Those are my “days off.” When Franny is on overload. But a constant these days is not wanting to eat. (The really slow and painful way to die…starve yourself. Big move Lipman.) True, that I’ve lost muscle mass is to be expected, but I’ve lost nine pounds since, unlike Humpty Dumpty, I put myself back together again. I ate last night. Not a lot but enough.
Mom and Doug were over. I couldn’t handle it. I couldn’t speak. I couldn’t take part in any conversation. I went to bed mid-evening. The night before, in a fit I had while only Chip was around to watch. I threw soft objects in the living room.
I really wanted to break every breakable I could. This took incredible self-control on my part. Chip said “What do you what?” (Attention, for one.) Me: “I want nothing! I’m nothing!” Bless that man, he put me in a bear hug. (Everyone should have a Chip. Trust me, you won’t be disappointed. You can’t have mine. I found him first.
I do find it hard to be part of this world. Especially as I’m not a participant. I imagine you might say I’m more of a participant with this blog than I was when I was alive. Interesting thought.
Oh, I realized I had read Catch-22 recently when I reached the last page.
One more thing. I finished the Springbok “Indian Princess” doll from the kit my mother bought for us to make together way back in 1970. She’s 16 ½ inches tall. She looks lovely. I’m now sewing the body for “Katrina,” the little Dutch girl. This is the second kit my mother bought. It broke my heart thinking she might not be here to see them (Or hell, I might go before they’re done.). Like an idiot, I found two more on Ebay which I promptly bought. Asshole.